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!
Thursday, February 9, 2012
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.
Publish Post
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.
Monday, April 25, 2011
My Lenten Journey
On Wednesday, March 9th I set out on a Lenten Challenge. Instead of giving something up for that time, I chose to make a choice to spend more time blogging about Jordan and this journey. As a busy mom, this required me to let go of something else in order to find the time to blog. I had initially thought I would blog daily...but quickly learned that it was not even a possibility in my crazy world!!
I found that it was very healing to write through the experiences and feelings of this past 6 weeks. It was actually hard sometimes to choose what to write about because there were several things going on at once! I have some topics that I would still like to cover and reflect upon but never got to them. I think this has helped me to see that I would like to try to blog more often...not once or twice a month.
But more than anything, I was encouraged and uplifted by the comments and responses from those of you who read my ramblings. Several of the things I experienced over this past several weeks have been normal situations for me. I travel this journey alone most of the time. By putting these stories on Jordan's Blossom, I have allowed you to catch a glimpse of my world. In turn, I have been blessed by your words. Thank you!!
I found that it was very healing to write through the experiences and feelings of this past 6 weeks. It was actually hard sometimes to choose what to write about because there were several things going on at once! I have some topics that I would still like to cover and reflect upon but never got to them. I think this has helped me to see that I would like to try to blog more often...not once or twice a month.
But more than anything, I was encouraged and uplifted by the comments and responses from those of you who read my ramblings. Several of the things I experienced over this past several weeks have been normal situations for me. I travel this journey alone most of the time. By putting these stories on Jordan's Blossom, I have allowed you to catch a glimpse of my world. In turn, I have been blessed by your words. Thank you!!
Wednesday, April 20, 2011
Swallowing...and Scary Moments
Over the past few days, we have experienced several of our "scary moments" with Jordan. The reality of our little girl is that she can't swallow. It's hard to explain to others because at the same time she can swallow. The best way to describe it is that she is unable to gather food together on the back of her tongue and forcefully push it down her esophagus. Normally the food just drips down the back of her throat and eventually she realizes it is there and she has a weak swallow that pushes a portion of that food a little bit further down.
Unfortunately, she is also missing a neurological function called peristalsis. This is the rippling effect that pushes your food from your esophagus into your stomach. Jordan just doesn't have it. We don't know why, it just makes it harder for her food to get where it needs to go.
Now, the description I just gave was based on pureed foods. For those of you familiar to baby foods, stage 1 or 2. Not yet to 3 where there are small chunks. We are talking smooth...like applesauce, yogurt, etc.
However, moving on to solid forms of food has not been possible because Jordan has a tendency to chew but not swallow. She, in fact, has a STRONG desire to chew! It has always been a challenge for us to find safe chewing objects. Many of you have seen her with a straw bent in half sticking out of her mouth. Although we don't feel it is the safest thing for our daughter to run around with a straw in her mouth, the alternative is that she finds the smallest crumb, lint ball, paperclip, whatever...and puts it in her mouth.
We have gone through cycles with her putting things in her mouth. Starting at around 1 1/2 she started recognizing that she enjoyed chewing and we tried using normal teethers and chew toys. As she grew older, we noticed that she was finding things left around and it became a danger to her. We have tried to be diligent about keeping small things put away. My boys have learned to be very careful not to leave out small toys, Legos, nerf gun bullets, etc. However, none of us are perfect...
Jordan spent the year of 2010 being NPO. That means that she could not have anything by mouth. We started the year with many struggles to keep things out of her mouth. Anything she could find, she wanted in her mouth. By summer, I couldn't let her outside without a watchful eye or she would be putting things in her mouth...sand, grass, sticks, rocks.
It was actually the final reason that we did not end up putting her into the ECSE classroom last fall. The teacher was extremely concerned about her putting things in her mouth and didn't feel that we would be able to get her a 1-on-1 para pro to watch her.
Some of our major incidents over the years include swallowing a small decorators nail that she found inside of a drawer to an end table. She had it in her mouth and I realized it and saw it - I laid her on her back and tried to sweep her mouth and it was gone! After a trip to the ER and an x-ray, we saw the little nail at the top of her large intestine. It eventually passed and everything was fine. Praise God!!!
The next major episode was a time she was playing in Conner's room and I heard her start to gag. I ran up and found her standing in the middle of the room with a mouthful of white paste! I wasn't sure what it was until I saw a piece of sidewalk chalk on the floor next to her with teeth marks on it. I ran her downstairs and held her upside down (I learned this after the nail incident) and swept her mouth repeatedly and then used a washcloth to clean it out. During this process, I called 911. She was still gagging but was starting to breathe normally as I spoke on the phone with the dispatcher. We determined that she didn't need medical assistance but I was then referred to poison control to ensure that there were no risks with the chalk. Again, she was fine in the end. Praise God!!!
We have had many other incidents where she would put things in her mouth and we would sweep them out. This just became a reality of our life.
By fall, we saw a tremendous improvement! I was actually able to let Jordan and Conner sit at the kitchen table playing playdoh and go in the kitchen to make lunch. I know it seems like a small thing, but for me this was HUGE!!! Although my eyes were still on her, I didn't have to sit by her side to do every activity. I didn't have to be in the same room as her at all times. I finally could let my little girl just play in our own home and not fear all the time. What a relief!!!
This past January, we headed back to Mary Free Bed for another swallow study and ended up beginning a round of feeding therapy. I think that opened up the floodgates! Within the first week of therapy, Jordan took the cork hot pad off the table following dinner into her bedroom and took several bites out of it and started gagging on it. (see pic below of what we pieced back together afterward.) A 1/2 hour later she was on my bed eating a tube of chapstick that was on my nightstand.
We have had several incidents since then and they just keep coming! Since this past Friday, she has gotten something every single day! Friday, she got some pretzels that we had been snacking on while watching a movie during her naptime. After she got up, she found the bag of pretzels! Because Derrick and I were both here and she wasn't gagging, we actually took pics and video.
Saturday, she found a jelly bean that Conner dropped after doing a devotions with the different colors of jellybeans and a little Easter poem. That time she started gagging. On Sunday, she found an ice cube that had dropped on the floor and was licking it. On Monday, she took an old tangerine out of the trash (I had just cleaned out the fridge) and took it out to the living room and took a bit out of it.
Yesterday, Conner had wanted a cookie but I wouldn't let him have one so I told him if he was hungry to go get an apple. I was down in the basement at the time. He went upstairs and got one out of the fridge, but also got the apple slicer out of the drawer. He left them on the kitchen counter and went into Jordan's room to play with her. At some point, he came down and Jordan found the apple and slicer and took them into her bedroom. After a few minutes, Mak went to check on her, and found her in her room with several bites out of the apple and the slicer on the floor! He brought her down to me and I got the apple out of her mouth.
I broke down.
I was so weary.
I was so scared.
How much more of this would it take before something would seriously get lodged and she would silently choke?
As much as I hate the sound of her gagging, it means she is still alive. I fear the day that I don't hear that sound and in the silence, assume everything is okay. I try every day to keep my home a safe environment for my children. Unfortunately, I feel like it is an impossible task with a child like Jordan. Everything is a risk because of her curiosity and strong desire to eat. She doesn't even distinguish between food and non-food very well. I feel like our own home isn't even safe for her.
Today, I am going to attempt to go through the house and find any risks and either collect them or write them down so we can secure them. We still have child locks...but only on some cabinets and drawers...and I think we need them on all that contain something she could get her hands on. We have to create a safe environment, both for her safety and my sanity.
I sometimes long for the simple life.
Wonder what it would be like to not worry all the time.
Yearn for extra energy to face all of the situations that drain me every day.
...and then crying, I look into the face of my beautiful daughter...and I know that my God and my Creator will help me to handle these situations. He trusts me to care for her. He gives me strength to face every day.
Unfortunately, she is also missing a neurological function called peristalsis. This is the rippling effect that pushes your food from your esophagus into your stomach. Jordan just doesn't have it. We don't know why, it just makes it harder for her food to get where it needs to go.
Now, the description I just gave was based on pureed foods. For those of you familiar to baby foods, stage 1 or 2. Not yet to 3 where there are small chunks. We are talking smooth...like applesauce, yogurt, etc.
However, moving on to solid forms of food has not been possible because Jordan has a tendency to chew but not swallow. She, in fact, has a STRONG desire to chew! It has always been a challenge for us to find safe chewing objects. Many of you have seen her with a straw bent in half sticking out of her mouth. Although we don't feel it is the safest thing for our daughter to run around with a straw in her mouth, the alternative is that she finds the smallest crumb, lint ball, paperclip, whatever...and puts it in her mouth.
We have gone through cycles with her putting things in her mouth. Starting at around 1 1/2 she started recognizing that she enjoyed chewing and we tried using normal teethers and chew toys. As she grew older, we noticed that she was finding things left around and it became a danger to her. We have tried to be diligent about keeping small things put away. My boys have learned to be very careful not to leave out small toys, Legos, nerf gun bullets, etc. However, none of us are perfect...
Jordan spent the year of 2010 being NPO. That means that she could not have anything by mouth. We started the year with many struggles to keep things out of her mouth. Anything she could find, she wanted in her mouth. By summer, I couldn't let her outside without a watchful eye or she would be putting things in her mouth...sand, grass, sticks, rocks.
It was actually the final reason that we did not end up putting her into the ECSE classroom last fall. The teacher was extremely concerned about her putting things in her mouth and didn't feel that we would be able to get her a 1-on-1 para pro to watch her.
Some of our major incidents over the years include swallowing a small decorators nail that she found inside of a drawer to an end table. She had it in her mouth and I realized it and saw it - I laid her on her back and tried to sweep her mouth and it was gone! After a trip to the ER and an x-ray, we saw the little nail at the top of her large intestine. It eventually passed and everything was fine. Praise God!!!
The next major episode was a time she was playing in Conner's room and I heard her start to gag. I ran up and found her standing in the middle of the room with a mouthful of white paste! I wasn't sure what it was until I saw a piece of sidewalk chalk on the floor next to her with teeth marks on it. I ran her downstairs and held her upside down (I learned this after the nail incident) and swept her mouth repeatedly and then used a washcloth to clean it out. During this process, I called 911. She was still gagging but was starting to breathe normally as I spoke on the phone with the dispatcher. We determined that she didn't need medical assistance but I was then referred to poison control to ensure that there were no risks with the chalk. Again, she was fine in the end. Praise God!!!
We have had many other incidents where she would put things in her mouth and we would sweep them out. This just became a reality of our life.
By fall, we saw a tremendous improvement! I was actually able to let Jordan and Conner sit at the kitchen table playing playdoh and go in the kitchen to make lunch. I know it seems like a small thing, but for me this was HUGE!!! Although my eyes were still on her, I didn't have to sit by her side to do every activity. I didn't have to be in the same room as her at all times. I finally could let my little girl just play in our own home and not fear all the time. What a relief!!!
This past January, we headed back to Mary Free Bed for another swallow study and ended up beginning a round of feeding therapy. I think that opened up the floodgates! Within the first week of therapy, Jordan took the cork hot pad off the table following dinner into her bedroom and took several bites out of it and started gagging on it. (see pic below of what we pieced back together afterward.) A 1/2 hour later she was on my bed eating a tube of chapstick that was on my nightstand.
We have had several incidents since then and they just keep coming! Since this past Friday, she has gotten something every single day! Friday, she got some pretzels that we had been snacking on while watching a movie during her naptime. After she got up, she found the bag of pretzels! Because Derrick and I were both here and she wasn't gagging, we actually took pics and video.
Saturday, she found a jelly bean that Conner dropped after doing a devotions with the different colors of jellybeans and a little Easter poem. That time she started gagging. On Sunday, she found an ice cube that had dropped on the floor and was licking it. On Monday, she took an old tangerine out of the trash (I had just cleaned out the fridge) and took it out to the living room and took a bit out of it.
Yesterday, Conner had wanted a cookie but I wouldn't let him have one so I told him if he was hungry to go get an apple. I was down in the basement at the time. He went upstairs and got one out of the fridge, but also got the apple slicer out of the drawer. He left them on the kitchen counter and went into Jordan's room to play with her. At some point, he came down and Jordan found the apple and slicer and took them into her bedroom. After a few minutes, Mak went to check on her, and found her in her room with several bites out of the apple and the slicer on the floor! He brought her down to me and I got the apple out of her mouth.
I broke down.
I was so weary.
I was so scared.
How much more of this would it take before something would seriously get lodged and she would silently choke?
As much as I hate the sound of her gagging, it means she is still alive. I fear the day that I don't hear that sound and in the silence, assume everything is okay. I try every day to keep my home a safe environment for my children. Unfortunately, I feel like it is an impossible task with a child like Jordan. Everything is a risk because of her curiosity and strong desire to eat. She doesn't even distinguish between food and non-food very well. I feel like our own home isn't even safe for her.
Today, I am going to attempt to go through the house and find any risks and either collect them or write them down so we can secure them. We still have child locks...but only on some cabinets and drawers...and I think we need them on all that contain something she could get her hands on. We have to create a safe environment, both for her safety and my sanity.
I sometimes long for the simple life.
Wonder what it would be like to not worry all the time.
Yearn for extra energy to face all of the situations that drain me every day.
...and then crying, I look into the face of my beautiful daughter...and I know that my God and my Creator will help me to handle these situations. He trusts me to care for her. He gives me strength to face every day.
Subscribe to:
Posts (Atom)