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!!!!!
Friday, December 2, 2011
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.
Thursday, April 14, 2011
Why Moms of Special-Needs Kids ROCK!
A few weeks ago I picked up a magazine called "all you" for the awesome coupons that it has inside, but found a treasure better than savings. There was an article called "Raising a child with special needs changed us for the better." I put it aside because it was during the process of Jordan's "envelope" and I wasn't in the right mindset to read anything relating to Jordan. This past weekend, I was sorting coupons and decided it was time to read it.
It amazed me that the author of the article has a blog that I had come across just a few weeks ago and knew that I wanted to check out a little more in the future. It is lovethatmax.com - this section was in the article I read, but is quoted as being adapted from the blog.
Why moms of special-needs liks rock!
*Because we never thought that "doing it all" would mean doing this much. But we do it all, and then some.
*Because we've discovered patience we never knew we had.
*Because we are willing to do something 10 times, 1,000 times if that's what it takes for our kids to learn something new.
*Because we have heard doctors tell us the worst, and we've refused to believe them.
*Because we have had bad days and breakdowns and bawl fests, then we pick ourselves up and keep right on going.
*Because we manage to get ourselves together and out the door looking pretty damn good. Heck, we even make sweatpants look attractive.
*Because we are strong. Who knew we could be this strong?
*Because we aren't just moms, wives, cleaners, chauffeurs, cooks and women who work. We are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
*Because we give our kids endless love and still have so much love left for our other kids, our husbands, our family.
*Because we understand our kids better than anyone else does - even if they can't talk or gesture or look us in the eye. We know. We just know.
*Because we never stop pushing, or hoping, for our kids.
*Because just when it seems like things are going OK, they're suddenly not, but we deal. We deal even when it seems like our heads or hearts might explode.
*Because when we look at our kids we just see great kids. Not kids with cerebral palsy/autism/Down syndrome/whatever label.
This list helped me to realize how much Jordan has changed me. I never realized that I could do what I have done over the past 4 years with her. I always looked at moms who had special-needs kids and said to myself "I could never do that!" Yet, God know I could. He knew that I needed to grow. Jordan is the tool He used to help me realize what I am capable of.
However, I do have days where I feel like I can't handle it. I have days that I feel like I am failing her and my entire family. I have days that I am weak and just want to quit. But that is when He steps in and gives me what I need to move on. He walks me through the challenges and stays by my side. He guides me in the decisions and gives me strength. The hardest part is recognizing that he is always there and will never leave me.
It amazed me that the author of the article has a blog that I had come across just a few weeks ago and knew that I wanted to check out a little more in the future. It is lovethatmax.com - this section was in the article I read, but is quoted as being adapted from the blog.
Why moms of special-needs liks rock!
*Because we never thought that "doing it all" would mean doing this much. But we do it all, and then some.
*Because we've discovered patience we never knew we had.
*Because we are willing to do something 10 times, 1,000 times if that's what it takes for our kids to learn something new.
*Because we have heard doctors tell us the worst, and we've refused to believe them.
*Because we have had bad days and breakdowns and bawl fests, then we pick ourselves up and keep right on going.
*Because we manage to get ourselves together and out the door looking pretty damn good. Heck, we even make sweatpants look attractive.
*Because we are strong. Who knew we could be this strong?
*Because we aren't just moms, wives, cleaners, chauffeurs, cooks and women who work. We are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
*Because we give our kids endless love and still have so much love left for our other kids, our husbands, our family.
*Because we understand our kids better than anyone else does - even if they can't talk or gesture or look us in the eye. We know. We just know.
*Because we never stop pushing, or hoping, for our kids.
*Because just when it seems like things are going OK, they're suddenly not, but we deal. We deal even when it seems like our heads or hearts might explode.
*Because when we look at our kids we just see great kids. Not kids with cerebral palsy/autism/Down syndrome/whatever label.
This list helped me to realize how much Jordan has changed me. I never realized that I could do what I have done over the past 4 years with her. I always looked at moms who had special-needs kids and said to myself "I could never do that!" Yet, God know I could. He knew that I needed to grow. Jordan is the tool He used to help me realize what I am capable of.
However, I do have days where I feel like I can't handle it. I have days that I feel like I am failing her and my entire family. I have days that I am weak and just want to quit. But that is when He steps in and gives me what I need to move on. He walks me through the challenges and stays by my side. He guides me in the decisions and gives me strength. The hardest part is recognizing that he is always there and will never leave me.
Wednesday, April 13, 2011
Words
Last week someone said something that I didn't really react to...but the next morning when I was telling Derrick the story, I broke down and started crying. I wanted to run to this blog and post what happened. Unfortunately, I was not willing to share who said it or what was said. That makes for a rather boring blog post.
I have been processing through this comment, the way I interpreted it, and the intended meaning behind it (in my opinion.) Mostly, it made me realize that I have a long way to go to truly accepting that not everyone views Jordan as I do.
I see her potential, not her limitations.
I see her strengths, not her weaknesses.
I see her beauty, not her imperfections.
I see her high-energy level, not a hyperactive child.
I see her as a gift from God.
Not something I could have ever asked for, yet he gave her to me.
In doing so, God has shown me that He trusts me.
More than I often trust myself.
I have been processing through this comment, the way I interpreted it, and the intended meaning behind it (in my opinion.) Mostly, it made me realize that I have a long way to go to truly accepting that not everyone views Jordan as I do.
I see her potential, not her limitations.
I see her strengths, not her weaknesses.
I see her beauty, not her imperfections.
I see her high-energy level, not a hyperactive child.
I see her as a gift from God.
Not something I could have ever asked for, yet he gave her to me.
In doing so, God has shown me that He trusts me.
More than I often trust myself.
Saturday, April 9, 2011
OOPS!!
I was slightly confused last week after Jordan's feeding appointment on Tuesday. I talked with Ellen at the session about realizing that Jordan was nearing the end of her scheduled appointments. I asked her whether she thought we would continue therapy or take a break and continue what seems to be a safe method of pleasure feeding. She told me that she thought we would take a break for 3-6 months since there isn't significant progress to move forward to getting her off her g-tube.
After returning home I didn't think much of it, but on Thursday I flipped my calendar to April to see what was coming up in the next week. Since it was spring break things were a little different than our normal schedule, but I noticed that Jordan had no more therapy scheduled. I remembered talking with the lady at Mary Free Bed when we scheduled Jordan for her therapy and I realized that Jordan had no more scheduled appointments! I kinda freaked out because it seemed like there was no closure to her feeding therapy and yet I had no more appointments.
I called Ellen on Thursday and left her a message explaining my confusion and asking if she could just let me know what she wanted me to do. Should I wait 3 months to schedule more therapy...6 months?!?!? I kind of rambled on the message because I was so shocked that all of a sudden I was faced with the end of this process that I was confused.
Since Ellen only works part-time, I was not surprised that I didn't hear back from her before the weekend. I didn't hear back on Monday and by Tuesday I was very tempted to call again, but didn't want to seem like a crazy woman! Finally, I heard back from her on Wednesday. Apparently, she had been confused by my message as well and had some problems with hearing the message on her phone and was unsure exactly what I was talking about. Oh yeah, did I forget to mention that Jordan has therapy scheduled through April 19!!!! Yeah, I messed up! When I didn't show for my Tuesday appointment, Ellen figured something was up and checked the message again and realized that I thought Jordan was done with feeding therapy.
I felt like such a scattered woman!! Jordan's therapy schedule is a major part of what my day to day schedule revolves around. I try so hard to keep it organized and on track. How in the world did I miss 3 weeks of scheduling?!?!?
I apologized to Ellen and laughed at myself. She told me that she was surprised because I have always been so on top of things and this was my first faux pos in 3 years! I went back to the schedule I received in the mail from MFB when I scheduled her and it shows appointments through April 19. I have no idea why I didn't put them in my calendar?!?!? I look forward to having a few more weeks to tie up these questions in my head...and hope that I can get my act together and not forget appointments anymore!!
After returning home I didn't think much of it, but on Thursday I flipped my calendar to April to see what was coming up in the next week. Since it was spring break things were a little different than our normal schedule, but I noticed that Jordan had no more therapy scheduled. I remembered talking with the lady at Mary Free Bed when we scheduled Jordan for her therapy and I realized that Jordan had no more scheduled appointments! I kinda freaked out because it seemed like there was no closure to her feeding therapy and yet I had no more appointments.
I called Ellen on Thursday and left her a message explaining my confusion and asking if she could just let me know what she wanted me to do. Should I wait 3 months to schedule more therapy...6 months?!?!? I kind of rambled on the message because I was so shocked that all of a sudden I was faced with the end of this process that I was confused.
Since Ellen only works part-time, I was not surprised that I didn't hear back from her before the weekend. I didn't hear back on Monday and by Tuesday I was very tempted to call again, but didn't want to seem like a crazy woman! Finally, I heard back from her on Wednesday. Apparently, she had been confused by my message as well and had some problems with hearing the message on her phone and was unsure exactly what I was talking about. Oh yeah, did I forget to mention that Jordan has therapy scheduled through April 19!!!! Yeah, I messed up! When I didn't show for my Tuesday appointment, Ellen figured something was up and checked the message again and realized that I thought Jordan was done with feeding therapy.
I felt like such a scattered woman!! Jordan's therapy schedule is a major part of what my day to day schedule revolves around. I try so hard to keep it organized and on track. How in the world did I miss 3 weeks of scheduling?!?!?
I apologized to Ellen and laughed at myself. She told me that she was surprised because I have always been so on top of things and this was my first faux pos in 3 years! I went back to the schedule I received in the mail from MFB when I scheduled her and it shows appointments through April 19. I have no idea why I didn't put them in my calendar?!?!? I look forward to having a few more weeks to tie up these questions in my head...and hope that I can get my act together and not forget appointments anymore!!
Tuesday, April 5, 2011
Finally started Compleat!!
Well, after waiting over a week for Meijer to get the Compleat in, they finally told me that they were out at their warehouse and didn't know when they would be getting it in. This is not a problem now because we are using her Pediasure/Boost mixture...however, once we start the Compleat, we have exactly one month's worth of food that we can get every month. Therefore, when our WIC resets for the new month and I go to get her food, I normally have no more than a day or so extra. I cannot just wait until it comes in. This is her only source of nutrition and I cannot risk it not being available.
I went through my list of WIC providers and realized that CVS is another location that I can use. Since they are less than a mile from our house (closer than Meijer) and I am there weekly to pick up a few great deals, it seemed like a perfect fit.
I stopped by there last Thursday and asked the Pharmacist if they could order the formula and I could pay for it through WIC. She said that they could get it and it would normally be there the next day, although sometimes it may take 2 days from the time I order depending on the time of day. I was so excited. I confirmed this with the Manager before leaving the store and waited for Jordan's Compleat to arrive!!
I went there Monday morning to score some deals and see if her food was in. It was!!! I proceeded to take it to the counter to check out and the girl behind the counter started to ring it up. I had 2 cases of 24 cans and each had to be rung in individually so it took a while. We started chatting and she told me that she had been on a g-tube for about 4 months several years before because she has Crohn's Disease. It's always interesting to meet someone who has lived this and hear a bit about their story.
I am so thankful to have started Jordan on this new food! The transition takes 5 weeks to get her on it 100%. If we transition too quickly, her body can reject the food and have some difficulty digesting it properly. Yesterday we took out 30 ml of her mixture and replaced it with the Compleat. Every 5 days we increase the Compleat and decrease the mixture.
The cost of Pediasure and Boost seemed expensive...but Compleat is ridiculous!!! Each 8.25 oz can is $4.18!!! Once Jordan is on the full amount, she will use about 3 cans a day. I am so glad that WIC is covering this expense for us!!
I went through my list of WIC providers and realized that CVS is another location that I can use. Since they are less than a mile from our house (closer than Meijer) and I am there weekly to pick up a few great deals, it seemed like a perfect fit.
I stopped by there last Thursday and asked the Pharmacist if they could order the formula and I could pay for it through WIC. She said that they could get it and it would normally be there the next day, although sometimes it may take 2 days from the time I order depending on the time of day. I was so excited. I confirmed this with the Manager before leaving the store and waited for Jordan's Compleat to arrive!!
I went there Monday morning to score some deals and see if her food was in. It was!!! I proceeded to take it to the counter to check out and the girl behind the counter started to ring it up. I had 2 cases of 24 cans and each had to be rung in individually so it took a while. We started chatting and she told me that she had been on a g-tube for about 4 months several years before because she has Crohn's Disease. It's always interesting to meet someone who has lived this and hear a bit about their story.
I am so thankful to have started Jordan on this new food! The transition takes 5 weeks to get her on it 100%. If we transition too quickly, her body can reject the food and have some difficulty digesting it properly. Yesterday we took out 30 ml of her mixture and replaced it with the Compleat. Every 5 days we increase the Compleat and decrease the mixture.
The cost of Pediasure and Boost seemed expensive...but Compleat is ridiculous!!! Each 8.25 oz can is $4.18!!! Once Jordan is on the full amount, she will use about 3 cans a day. I am so glad that WIC is covering this expense for us!!
Tuesday, March 29, 2011
IEP
Today's IEP for Jordan went very well. Derrick and I met with Karen, the physical therapist, Carol, the occupational therapist, JoAnne, the speech path, Pam, the ECSE classroom teacher, and Angie, the Director of special education.
First, we went over Jordan's evaluation...the envelope I didn't want to open. Each therapist gave their summary of Jordan and then we responded with our thoughts. Overall, we agree with the report, although feel that the actual numbers are skewed because of Jordan's distractability and lack of focus during the evaluations.
Next, we discussed that we would like to try Jordan in the ECSE classroom next year, but want to make sure that it is not too much for her in addition to the likelihood of outside therapy (feeding, OT following thumb surgery, etc.) We are scheduling her for 3 days a week with the option to keep her home for a day whenever we feel that is too much. We were thinking we would only send her 2 days to start and this was a good compromise because it allows us to easily transition into 3 days whenever we feel ready. The director offered to provide an additional adult in the classroom on the days Jordan is there to allow assistance in monitoring her and helping her with some of her challenges. This will be in place for the first 6 weeks and we will evaluate in mid-October if we need to continue that assistance. We will also train the nurse and 1 or 2 other individuals in the fall to do her g-tube feedings and to be prepared to replace her tube if it comes out. We requested that Jordan be removed from the classroom during snack time by the additional adult so that there is not a battle with her wanting to eat what the other kids are having.
Jordan will no longer be receiving individual physical therapy as she has no specific challenge areas in gross motor. Karin offered to consult with us if we ever came across something that concerned us. We will meet with her one more time before this school year is over.
Jordan will receive OT through the sensory motor group that she has been participating in during the past few weeks. We will continue to meet with this year's group through the remainder of the school year and next year she will participate with her class. Knowing that she may have her thumb surgery sometime late summer or fall, she will have individual OT following that as part of her rehab. If we feel it is necessary for additional support, we will work that out with Carol at that time.
Jordan will be receiving speech at least 2 times a week while in the class. JoAnne said that at least one of the days Jordan is there, she will be in the class for most of the time and will work with her individually or in a small group. She will also work with her on the other day she is there ensuring that the educational focus for Jordan be on her speech development. We are still waiting on the communication device, but are also going to attempt to create a usable picture system for Jordan that she can use when she becomes frustrated with our inability to understand her. I am hoping to use this significantly this summer and help her to communicate with us as well as with others so she is better understood.
Transportation still has to be decided, but we requested that Jordan be picked up as late as possible due to her feeding schedule and be transported in a car seat on the bus due to her small size. I am very nervous about putting her on a bus and always have the option to drive her myself...but final decisions don't have to be made until late August.
Overall, I feel good about the IEP. I know that all of the therapists working with Jordan have her best interest at hand, I just sometimes feel that they are always so focused on what they are doing, that they might not recognize all that I am doing for her in our own home. We work every day on speech, occupational, and physical therapy. I may approach it differently than they do and don't have the educational background to support what I am doing...but I am a mom, and I love my girl, and will do anything to help her develop the skills she will need to be successful in life!!!
First, we went over Jordan's evaluation...the envelope I didn't want to open. Each therapist gave their summary of Jordan and then we responded with our thoughts. Overall, we agree with the report, although feel that the actual numbers are skewed because of Jordan's distractability and lack of focus during the evaluations.
Next, we discussed that we would like to try Jordan in the ECSE classroom next year, but want to make sure that it is not too much for her in addition to the likelihood of outside therapy (feeding, OT following thumb surgery, etc.) We are scheduling her for 3 days a week with the option to keep her home for a day whenever we feel that is too much. We were thinking we would only send her 2 days to start and this was a good compromise because it allows us to easily transition into 3 days whenever we feel ready. The director offered to provide an additional adult in the classroom on the days Jordan is there to allow assistance in monitoring her and helping her with some of her challenges. This will be in place for the first 6 weeks and we will evaluate in mid-October if we need to continue that assistance. We will also train the nurse and 1 or 2 other individuals in the fall to do her g-tube feedings and to be prepared to replace her tube if it comes out. We requested that Jordan be removed from the classroom during snack time by the additional adult so that there is not a battle with her wanting to eat what the other kids are having.
Jordan will no longer be receiving individual physical therapy as she has no specific challenge areas in gross motor. Karin offered to consult with us if we ever came across something that concerned us. We will meet with her one more time before this school year is over.
Jordan will receive OT through the sensory motor group that she has been participating in during the past few weeks. We will continue to meet with this year's group through the remainder of the school year and next year she will participate with her class. Knowing that she may have her thumb surgery sometime late summer or fall, she will have individual OT following that as part of her rehab. If we feel it is necessary for additional support, we will work that out with Carol at that time.
Jordan will be receiving speech at least 2 times a week while in the class. JoAnne said that at least one of the days Jordan is there, she will be in the class for most of the time and will work with her individually or in a small group. She will also work with her on the other day she is there ensuring that the educational focus for Jordan be on her speech development. We are still waiting on the communication device, but are also going to attempt to create a usable picture system for Jordan that she can use when she becomes frustrated with our inability to understand her. I am hoping to use this significantly this summer and help her to communicate with us as well as with others so she is better understood.
Transportation still has to be decided, but we requested that Jordan be picked up as late as possible due to her feeding schedule and be transported in a car seat on the bus due to her small size. I am very nervous about putting her on a bus and always have the option to drive her myself...but final decisions don't have to be made until late August.
Overall, I feel good about the IEP. I know that all of the therapists working with Jordan have her best interest at hand, I just sometimes feel that they are always so focused on what they are doing, that they might not recognize all that I am doing for her in our own home. We work every day on speech, occupational, and physical therapy. I may approach it differently than they do and don't have the educational background to support what I am doing...but I am a mom, and I love my girl, and will do anything to help her develop the skills she will need to be successful in life!!!
Final Preparations
Well, this is it...Jordan's IEP is in 2 hours. It's early in the morning so my brain is still kinda slow. I have spent time over the past few days reading through her past IEP's, reading through info I found online, talking with and listening to other people's thoughts and ideas, and now there is nothing more I can do.
Last night I finally realized that God is in control. He loves Jordan more than I do...although I'm not even sure that is possible!! I believe that since the day she was conceived, she has faced numerous obstacles...some of which, other children never overcome...and yet she is here...and she is strong...and she is amazing!
I know that over the past year or so I came to the realization that I needed to stop praying for Jordan to be able to eat, to be able to talk, to be "normal." I started to pray that God would work inside her and make her His. I prayed that He would use her in whatever way He needed to, not the way I wanted her to be. I prayed that He would give her what she needed, not what I wanted her to have. These prayers became extremely healing for me. I no longer worried about her future, I knew that God had that in His control.
I now realized that it is okay to hurt, to grieve, and to cry the losses in our life. But we also need to be able to get up and move on and know that it is not always up to us to determine the path for those we love. I love my husband and my kids, but I don't own and/or control them. I have been given the enormous responsibility of being a symbol of God in their lives, someone to lead them to Him, but I am NOT Him. I do not hold the responsibility of making sure everything goes as I have planned...it's not up to me.
Therefore, I lay this morning's meeting and Jordan's IEP before God. I know that I have done everything I can to prepare myself for this meeting, and I look forward to creating a workable plan for her education, but I know that God will also be present at the meeting. I believe that if I can just sit back and allow Him to participate, I will find that things will work out better in the end.
Last night I finally realized that God is in control. He loves Jordan more than I do...although I'm not even sure that is possible!! I believe that since the day she was conceived, she has faced numerous obstacles...some of which, other children never overcome...and yet she is here...and she is strong...and she is amazing!
I know that over the past year or so I came to the realization that I needed to stop praying for Jordan to be able to eat, to be able to talk, to be "normal." I started to pray that God would work inside her and make her His. I prayed that He would use her in whatever way He needed to, not the way I wanted her to be. I prayed that He would give her what she needed, not what I wanted her to have. These prayers became extremely healing for me. I no longer worried about her future, I knew that God had that in His control.
I now realized that it is okay to hurt, to grieve, and to cry the losses in our life. But we also need to be able to get up and move on and know that it is not always up to us to determine the path for those we love. I love my husband and my kids, but I don't own and/or control them. I have been given the enormous responsibility of being a symbol of God in their lives, someone to lead them to Him, but I am NOT Him. I do not hold the responsibility of making sure everything goes as I have planned...it's not up to me.
Therefore, I lay this morning's meeting and Jordan's IEP before God. I know that I have done everything I can to prepare myself for this meeting, and I look forward to creating a workable plan for her education, but I know that God will also be present at the meeting. I believe that if I can just sit back and allow Him to participate, I will find that things will work out better in the end.
Friday, March 25, 2011
The Envelope...Part 2
Well, I did it. I opened up the envelope and read the report.
It was titled "Early Childhood Special Education Reevaluation"
I actually made it through the whole thing without a problem...the first time. Then I went over it again, but it wasn't so easy the second time. I took my time actually trying to process through what it said and understand it. I think it was quite accurate in describing the Jordan I know and love and yet I was astounded at the actual test results. That's when the tears started to flow and I kept re-reading parts of the report and test results.
The Brigance Diagnostic Inventory of Early Development, Second Edition (IED-II) is a standardized test that is used for children from birth to 7. She was only evaluated in cognition, language and motor skills. Her results are broken down into several subcategories, but the summary totals are as follows:
Total Motor:
Quotient (with a mean of 100) = 56
Percentile (same age kids score at/below) = <.1
Age-Equivalent = 2 years, 5 months
Total Language:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 1 month
Total Cognitive/Academic:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 3 months
The Preschool Language Scale - 4 (PLS-4) measures a young child's receptive and expressive communication ability. Average scores fall between 85-115. Her results were:
Auditory Comprehension:
Standard Score = 61
Age Equivalent = 2 years, 3 months
Expressive Communication:
Standard Score = 67
Age Equivalent = 1 year, 11 months
Total Language Score:
Standard Score = 60
Age Equivalent = 2 years, 0 months
I was extremely confused by these answers but the more I studied them the more I realized what they actually said. Basically, Jordan is performing at around 2 years old. In a comparison with other kids her age, less than 1% score lower than her. Her overall testing scores her in the area of mild mental retardation. WHAT?!?!?!?!?
I refuse to believe these scores are an accurate representation of Jordan!!!
The actual written portion describes the Jordan I see everyday. It describes things I know that she can do and the personality I know. I believe that there are many more things that she can do beyond what was described but due to her "personality," she didn't complete many of the tests. Some of the phrases that describe that are, "Jordan's lack of attention to task negatively hindered her ability to complete tasks. She was cooperative, but easily distracted. Jordan would enjoy playing with the toys and not respond to the examiner's directions.", "Jordan showed frustration during several of the tasks. When attempting to turn pages one at a time, in a book, she stood up, walked away from the book and screamed. Jordan often would flop backwards onto the floor or get up and remove herself from the testing area when tasks became challenging for her.", "When she becomes frustrated or perceives a task to be difficult, Jordan will often call out "momma" or flop down and refuse to participate." and "Jordan prefers to direct her session and shows limited cooperation with tasks that she does not choose."
These are my everyday challenges with Jordan.
This is the Jordan that not everyone else sees.
These are the things that make me unsure what is the best thing for her.
Again, they are recommending that we place her in the Early Childhood Special Education classroom. They feel that "she would benefit from the daily practice to improve her communication, fine and gross motor skills throughout the preschool setting" because she "seems to benefit from imitating others in terms of follow through and trying new activities." However, they add that she "requires visual and verbal support and multiple repetitions to improve skills that are being taught" and that "it is very important that Jordan be given verbal information with extra time to process the information and to execute the command."
Once again, I don't like that the school feels that putting her in the class would benefit her because she would "imitate others." I understand that she requires extra time and additional support, but last year when I requested a one-on-one para pro they told me there wasn't funding available for that. How is Jordan supposed to get that support in a class with 12 kids and 1 teacher and 1 assistant?
Derrick and I have been leaning toward allowing her to be in the class 2 days a week with a one-on-one, medically trained professional administering her g-tube feedings and a one-on-one para pro assisting her during class "snack-time." I now feel that they are going to push having her in class 5 days a week and I know that she needs more attention than she will receive without additional support in the classroom.
So now the craziness begins. We are scheduled for Jordan's IEP on Tuesday morning. That gives us the weekend to come up with what we consider to be an acceptable plan for Jordan for next year. We plan to cover everything from how long she can be on the bus to how much one-on-one speech we want her to receive. I guess it's a good thing we are driving up to Traverse City tomorrow...long car rides are great for conversation...well, at least as long as a movie is playing for the kids!!!
It was titled "Early Childhood Special Education Reevaluation"
I actually made it through the whole thing without a problem...the first time. Then I went over it again, but it wasn't so easy the second time. I took my time actually trying to process through what it said and understand it. I think it was quite accurate in describing the Jordan I know and love and yet I was astounded at the actual test results. That's when the tears started to flow and I kept re-reading parts of the report and test results.
The Brigance Diagnostic Inventory of Early Development, Second Edition (IED-II) is a standardized test that is used for children from birth to 7. She was only evaluated in cognition, language and motor skills. Her results are broken down into several subcategories, but the summary totals are as follows:
Total Motor:
Quotient (with a mean of 100) = 56
Percentile (same age kids score at/below) = <.1
Age-Equivalent = 2 years, 5 months
Total Language:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 1 month
Total Cognitive/Academic:
Quotient (with a mean of 100) = <57
Percentile (same age kids score at/below) = <.2
Age-Equivalent = 2 years, 3 months
The Preschool Language Scale - 4 (PLS-4) measures a young child's receptive and expressive communication ability. Average scores fall between 85-115. Her results were:
Auditory Comprehension:
Standard Score = 61
Age Equivalent = 2 years, 3 months
Expressive Communication:
Standard Score = 67
Age Equivalent = 1 year, 11 months
Total Language Score:
Standard Score = 60
Age Equivalent = 2 years, 0 months
I was extremely confused by these answers but the more I studied them the more I realized what they actually said. Basically, Jordan is performing at around 2 years old. In a comparison with other kids her age, less than 1% score lower than her. Her overall testing scores her in the area of mild mental retardation. WHAT?!?!?!?!?
I refuse to believe these scores are an accurate representation of Jordan!!!
The actual written portion describes the Jordan I see everyday. It describes things I know that she can do and the personality I know. I believe that there are many more things that she can do beyond what was described but due to her "personality," she didn't complete many of the tests. Some of the phrases that describe that are, "Jordan's lack of attention to task negatively hindered her ability to complete tasks. She was cooperative, but easily distracted. Jordan would enjoy playing with the toys and not respond to the examiner's directions.", "Jordan showed frustration during several of the tasks. When attempting to turn pages one at a time, in a book, she stood up, walked away from the book and screamed. Jordan often would flop backwards onto the floor or get up and remove herself from the testing area when tasks became challenging for her.", "When she becomes frustrated or perceives a task to be difficult, Jordan will often call out "momma" or flop down and refuse to participate." and "Jordan prefers to direct her session and shows limited cooperation with tasks that she does not choose."
These are my everyday challenges with Jordan.
This is the Jordan that not everyone else sees.
These are the things that make me unsure what is the best thing for her.
Again, they are recommending that we place her in the Early Childhood Special Education classroom. They feel that "she would benefit from the daily practice to improve her communication, fine and gross motor skills throughout the preschool setting" because she "seems to benefit from imitating others in terms of follow through and trying new activities." However, they add that she "requires visual and verbal support and multiple repetitions to improve skills that are being taught" and that "it is very important that Jordan be given verbal information with extra time to process the information and to execute the command."
Once again, I don't like that the school feels that putting her in the class would benefit her because she would "imitate others." I understand that she requires extra time and additional support, but last year when I requested a one-on-one para pro they told me there wasn't funding available for that. How is Jordan supposed to get that support in a class with 12 kids and 1 teacher and 1 assistant?
Derrick and I have been leaning toward allowing her to be in the class 2 days a week with a one-on-one, medically trained professional administering her g-tube feedings and a one-on-one para pro assisting her during class "snack-time." I now feel that they are going to push having her in class 5 days a week and I know that she needs more attention than she will receive without additional support in the classroom.
So now the craziness begins. We are scheduled for Jordan's IEP on Tuesday morning. That gives us the weekend to come up with what we consider to be an acceptable plan for Jordan for next year. We plan to cover everything from how long she can be on the bus to how much one-on-one speech we want her to receive. I guess it's a good thing we are driving up to Traverse City tomorrow...long car rides are great for conversation...well, at least as long as a movie is playing for the kids!!!
The Envelope
Jordan had speech this morning. It seemed like a normal session. Conner and I sat outside reading a book and we heard some talking and occasional screeches coming from her. When they were done, Jo brought her out and said that she did okay...a few temper tantrums and threw the cars once. She didn't get her to say the target word "water." She did say "wa" but would not repeat it for "wawa." It is another week of trying to target a word with her.
Then JoAnne hands me an envelope and starts to cry. She tells me this is Jordan's report and that she's sorry. She says that it was very hard for her to write and as her mom she knows it will be extremely hard to read. She told me that the tests are standardized and Jordan doesn't perform well on them, but she does not view her as the scores do.
Now I'm terrified to open the envelope and read what's inside. I know that the psychologist at the Gerber Center labeled her as between "borderline deficiency" and "dullness". He admitted that he felt that there was more potential based on seeing her, but that is what the test showed. I mentioned that to Jo a few weeks ago and she said that their scores were lower than that. I don't know if I even want to read the report.
I know that my beautiful daughter is full of life and is a ton of fun and improving every day!!! I know that I love her with my whole heart and then some!!! I know that God has created her just as she is to serve a purpose and reflect His love. I know that regardless of what some test says, I will never doubt the limits of my precious Jordan!!!
...but I'm still terrified to open the envelope...
Then JoAnne hands me an envelope and starts to cry. She tells me this is Jordan's report and that she's sorry. She says that it was very hard for her to write and as her mom she knows it will be extremely hard to read. She told me that the tests are standardized and Jordan doesn't perform well on them, but she does not view her as the scores do.
Now I'm terrified to open the envelope and read what's inside. I know that the psychologist at the Gerber Center labeled her as between "borderline deficiency" and "dullness". He admitted that he felt that there was more potential based on seeing her, but that is what the test showed. I mentioned that to Jo a few weeks ago and she said that their scores were lower than that. I don't know if I even want to read the report.
I know that my beautiful daughter is full of life and is a ton of fun and improving every day!!! I know that I love her with my whole heart and then some!!! I know that God has created her just as she is to serve a purpose and reflect His love. I know that regardless of what some test says, I will never doubt the limits of my precious Jordan!!!
...but I'm still terrified to open the envelope...
Wednesday, March 23, 2011
Compleat!!!
Yesterday, I received a call from Jordan's dietitian at the Gerber Center. After meeting with the neurodevelopmental specialist last week and mentioning that I would like to consider using a different formula than the magic mixture of 3 different ones that we have been using for 2 1/2 years. This has been a process I have been working on since last spring/summer.
Jordan's food mixture is made up of Pediasure, Pediasure with Fiber, and Boost 1.5. We get the Pediasure's through WIC and have to purchase them at the store (usually Meijer) and we get the Boost through Airway Oxygen. The problem with the Pediasure is that there have been many times I cannot find vanilla Pediasure on the shelves. I have actually driven to 3 different stores in one day in order to get what I needed to fulfill my WIC benefits before they ran out for the month. We even tried to order it through the pharmacy and through the grocery manager and both of those efforts failed.
I am excited mostly because it has bothered me for over a year that the only nutrition Jordan receives is from a bottle of artificially prepared liquid. The ingredients on the Pediasure are water, sugar (sucrose), corn maltodextrin, milk protein concentrate, high oleic safflower oil, soy oil, whey protein concentrate, medium chain triglycerides, etc. The ingredients on the Boost are water, maltodextrin, soybean oil, soybean caseinate (from milk), sugar, high oleic sunflower oil, whey protein concentrate, medium chain triglycerides, calcium caseinate, etc. I hate that during the first 3 years of Jordan's life, when nutrition is vital for brain development, she has been only getting this mixture of ingredients. I understand that it is considered "complete nutrition", however, in my opinion, it is not healthy.
The new food is called Compleat Pediatric and is manufactured by Nestle'. It is a blenderized tube feeding formula made from water, cranberry juice cocktail (from concentrate), corn syrup solids, chicken puree with natural flavors (water, dehydrated chicken meat), pea puree (water, pea powder), green bean puree (water, green bean powder), sodium caseinate (milk), peach puree, etc. I just feel so much better about giving her food that is closer to what we eat. I know that there are still artificial and manufactured ingredients in this formula, but it is so much closer to what she would be eating if she could.
The other nice thing is that we order it through the pharmacy at Meijer or Family Fare or other grocery pharmacies that accept WIC. This means that I call in and order it and a few days later, I go to the pharmacy and pick it up! LOVE IT!!!
We get her first case tomorrow and start the transition on Friday. It will take 25 days. Every 5 days we increase the amount of Compleat and decrease the amount of her current mixture. We also will be able to reduce the amount of water we give her following her feeding because we will be increasing the total amount of her feedings in order to match the calories/oz that she loses from the Boost 1.5.
Jordan's food mixture is made up of Pediasure, Pediasure with Fiber, and Boost 1.5. We get the Pediasure's through WIC and have to purchase them at the store (usually Meijer) and we get the Boost through Airway Oxygen. The problem with the Pediasure is that there have been many times I cannot find vanilla Pediasure on the shelves. I have actually driven to 3 different stores in one day in order to get what I needed to fulfill my WIC benefits before they ran out for the month. We even tried to order it through the pharmacy and through the grocery manager and both of those efforts failed.
I am excited mostly because it has bothered me for over a year that the only nutrition Jordan receives is from a bottle of artificially prepared liquid. The ingredients on the Pediasure are water, sugar (sucrose), corn maltodextrin, milk protein concentrate, high oleic safflower oil, soy oil, whey protein concentrate, medium chain triglycerides, etc. The ingredients on the Boost are water, maltodextrin, soybean oil, soybean caseinate (from milk), sugar, high oleic sunflower oil, whey protein concentrate, medium chain triglycerides, calcium caseinate, etc. I hate that during the first 3 years of Jordan's life, when nutrition is vital for brain development, she has been only getting this mixture of ingredients. I understand that it is considered "complete nutrition", however, in my opinion, it is not healthy.
The new food is called Compleat Pediatric and is manufactured by Nestle'. It is a blenderized tube feeding formula made from water, cranberry juice cocktail (from concentrate), corn syrup solids, chicken puree with natural flavors (water, dehydrated chicken meat), pea puree (water, pea powder), green bean puree (water, green bean powder), sodium caseinate (milk), peach puree, etc. I just feel so much better about giving her food that is closer to what we eat. I know that there are still artificial and manufactured ingredients in this formula, but it is so much closer to what she would be eating if she could.
The other nice thing is that we order it through the pharmacy at Meijer or Family Fare or other grocery pharmacies that accept WIC. This means that I call in and order it and a few days later, I go to the pharmacy and pick it up! LOVE IT!!!
We get her first case tomorrow and start the transition on Friday. It will take 25 days. Every 5 days we increase the amount of Compleat and decrease the amount of her current mixture. We also will be able to reduce the amount of water we give her following her feeding because we will be increasing the total amount of her feedings in order to match the calories/oz that she loses from the Boost 1.5.
A Week = 7 Days
Yes, I realize that an entire week has passed since I have posted anything during this period in which I committed to blogging daily!!! I will try to make up for it with multiple posts over the next few days :)
Wednesday, March 16, 2011
Nothing...
So, I was thinking that since we stayed home today and I wouldn't have much to report on, it would be a great day for posting some pics and videos. Unfortunately, there was a ton of stuff to do around the house after a crazy weekend followed by 2 crazy days!! And then, my wonderful husband took the little kids to church tonight so I could work on the taxes...it is only 4 weeks away!
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Tuesday, March 15, 2011
Another Crazy Day!!!!!
Today we started off with Jordan again joining the ECSE (Early Childhood Special Education) 3 year-old class for Speech/OT group. She did great! She again had difficulty sitting still and was a talker today and kept pointing to her sleeve and saying "shirt." While she was in group, I filled out a Sensory Profile and started to fill out the forms for her upcoming IEP.
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
Monday, March 14, 2011
Summary of Today's Evaluation
Today Jordan met with the Psychologist and Neurodevelopmental specialist and was evaluated on her development. She weighed in at 26.5 lbs and was 35.5 inches.
During her psychological evaluation she did quite well and was found to be somewhere between what is considered normal and what is labeled low for intelligence and performance of verbal and nonverbal skills. He believes that she could make cognitive progress as she continues to improve in her verbal abilities. He noticed some anxiety that manifested itself with her perseverating* at times through twirling her hair or her hands on the table.
*Perseverating means they do certain actions over and over again, like repeating a phrase, shutting a door, twiddling fingers, lining up toys, rubbing hands together, spinning objects, etc.
Her neurodevelopmental eval went well and she encouraged us to continue what we are doing and focus on Jordan's speech therapy and oral motor/feeding therapy as her gross motor and fine motor skills seem to be developing quite well. When I questioned about her high sensory needs she recommended we have the school perform a sensory profile and discuss some sensory planning to help her function at a more calm, stable level.
This system was completely different than what has been done in the past. We used to have a 4 hour appointment where we would rotate meeting with an OT, PT, SLP, nutritionist, social worker, as well as the 2 we saw today. I don't believe that the evaluation is as thorough and I have always felt that the Neurodevelopmental specialist doesn't always give straight answers to my questions. I am somewhat disappointed that we were unable to see the SLP in particular because that is the area of greatest concern for Jordan.
Now I am preparing for tomorrow's appointments...Jordan's feeding therapy was canceled so she only has the group OT/speech tomorrow at school. I hope to have some video of her to post soon!!
During her psychological evaluation she did quite well and was found to be somewhere between what is considered normal and what is labeled low for intelligence and performance of verbal and nonverbal skills. He believes that she could make cognitive progress as she continues to improve in her verbal abilities. He noticed some anxiety that manifested itself with her perseverating* at times through twirling her hair or her hands on the table.
*Perseverating means they do certain actions over and over again, like repeating a phrase, shutting a door, twiddling fingers, lining up toys, rubbing hands together, spinning objects, etc.
Her neurodevelopmental eval went well and she encouraged us to continue what we are doing and focus on Jordan's speech therapy and oral motor/feeding therapy as her gross motor and fine motor skills seem to be developing quite well. When I questioned about her high sensory needs she recommended we have the school perform a sensory profile and discuss some sensory planning to help her function at a more calm, stable level.
This system was completely different than what has been done in the past. We used to have a 4 hour appointment where we would rotate meeting with an OT, PT, SLP, nutritionist, social worker, as well as the 2 we saw today. I don't believe that the evaluation is as thorough and I have always felt that the Neurodevelopmental specialist doesn't always give straight answers to my questions. I am somewhat disappointed that we were unable to see the SLP in particular because that is the area of greatest concern for Jordan.
Now I am preparing for tomorrow's appointments...Jordan's feeding therapy was canceled so she only has the group OT/speech tomorrow at school. I hope to have some video of her to post soon!!
Sunday, March 13, 2011
Eval tomorrow...not sure what to expect...
Well, once again I failed to post yesterday...can I blame it on the fact that I spent the morning facing the crazies at Meijer and then came home to clean the house and make a HUGE pot of soup and 21 sandwiches for today's lunch and then had my home invaded by 10 wonderful family members?!?!? Well, it was quite a crazy day and I didn't even think about missing it until I was at church this morning. It was great to have so many people here this weekend, but I am now looking forward to what the week has to hold.
Tomorrow Jordan has an evaluation with her neurodevelopmental specialist, Dr. Burdo-Hartman and the psychologist, Dr. Pasternyk. In the past few years, this has been a HUGE eval by several different therapists and specialists, but they have altered things and now I'm not so sure what to expect. Tonight Derrick and I put together a list of questions and things that we are curious about and I am looking forward to their views. Plus, it will give me something fun to blog about tomorrow!!
Well, since we lost an hour last night with the time change, and my fabulous nieces dragged me to Wendy's at midnight to get french fries...after eating a ton of red vines and dark chocolate raisinets, I am now totally and completely exhausted!!! Oh yeah, and I have to leave the house with the 2 little ones tomorrow by about 7am!!!!! Therefore, I am going to bed!!!
Tomorrow Jordan has an evaluation with her neurodevelopmental specialist, Dr. Burdo-Hartman and the psychologist, Dr. Pasternyk. In the past few years, this has been a HUGE eval by several different therapists and specialists, but they have altered things and now I'm not so sure what to expect. Tonight Derrick and I put together a list of questions and things that we are curious about and I am looking forward to their views. Plus, it will give me something fun to blog about tomorrow!!
Well, since we lost an hour last night with the time change, and my fabulous nieces dragged me to Wendy's at midnight to get french fries...after eating a ton of red vines and dark chocolate raisinets, I am now totally and completely exhausted!!! Oh yeah, and I have to leave the house with the 2 little ones tomorrow by about 7am!!!!! Therefore, I am going to bed!!!
Friday, March 11, 2011
Failed already!!!
Well, the second day of lent came and went without me posting anything...FAIL!!! This is going to be much harder than I imagined! I suppose it was because it was a pretty boring day...nothing to report on. I know that I have lots to catch up on, but for some reason, I just never did.
This morning Jordan had speech at Century Park with her school speech path, JoAnne Hurley. JoAnne also worked with Conner a few years ago and is great! This year started off a little rough, but I think Jordan was just so difficult to work with that it took a while before Jo figured her out. Jordan now loves to go see Jo and there are no more tantrums or problems. Although Jordan doesn't always go along with Jo's plan, most of the time she is cooperative and participates. Today I asked about the communication device that Jordan will be trying out for the next few months - Jo was going to look into that and hopefully we will have that soon!
As I write this, Jordan is bringing every pair of shoes, boots, etc from her room and piling them next to me! Do I have a fashion queen on my hands?!?!?! maybe...
This morning Jordan had speech at Century Park with her school speech path, JoAnne Hurley. JoAnne also worked with Conner a few years ago and is great! This year started off a little rough, but I think Jordan was just so difficult to work with that it took a while before Jo figured her out. Jordan now loves to go see Jo and there are no more tantrums or problems. Although Jordan doesn't always go along with Jo's plan, most of the time she is cooperative and participates. Today I asked about the communication device that Jordan will be trying out for the next few months - Jo was going to look into that and hopefully we will have that soon!
As I write this, Jordan is bringing every pair of shoes, boots, etc from her room and piling them next to me! Do I have a fashion queen on my hands?!?!?! maybe...
Wednesday, March 9, 2011
Lent
I'm not much for giving something up for Lent. But for some reason, this year I am going to try something new. I am going to attempt to blog about my journey with Jordan for the next 40 days...every day. I know it will involve sacrifice...maybe I will have to get up earlier to do it...maybe I will have to do it when all I want to do is sit down and relax and not do anything. The point is that I will force myself to have the discipline to spend time every day documenting our life and processing through my thoughts and feelings and putting them into words.
The upcoming month is full of lots of therapy (speech, OT, feeding), some big appointments (multidisciplinary neurodevelopmental eval), as well as just daily life. I'm sure in the midst of it all I will find many things to share. I will attempt to spend the next day or so summarizing the past few months and then move forward day to day.
When I look at my last post...November 8, 2010, I realize that I have been AWFUL in keeping up with this blog! Since Jordan is my third child, I actually have no baby book for her and although I have recorded much of her medical information, I seem to be failing at recording the normal milestones that children reach. That was part of my intention of starting this blog and now I intend to make it a priority.
I pray that this experience helps me to really dig deeper into discovering the impact that this amazing little girl has on my life and share that with others in hope that they will see just what a miracle she is.
The upcoming month is full of lots of therapy (speech, OT, feeding), some big appointments (multidisciplinary neurodevelopmental eval), as well as just daily life. I'm sure in the midst of it all I will find many things to share. I will attempt to spend the next day or so summarizing the past few months and then move forward day to day.
When I look at my last post...November 8, 2010, I realize that I have been AWFUL in keeping up with this blog! Since Jordan is my third child, I actually have no baby book for her and although I have recorded much of her medical information, I seem to be failing at recording the normal milestones that children reach. That was part of my intention of starting this blog and now I intend to make it a priority.
I pray that this experience helps me to really dig deeper into discovering the impact that this amazing little girl has on my life and share that with others in hope that they will see just what a miracle she is.
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