Showing posts with label cerebral palsy. Show all posts
Showing posts with label cerebral palsy. Show all posts
Wednesday, June 26, 2013
Monday, April 22, 2013
An Official, Unofficial Announcement
The official part? Our family has grown by one. The unofficial part? It won't be legal for six months. On March 23, 2013, a bright eyed, sweet, innocent, and energetic 3.5 year old little boy came to live with us. In a brief instant, our lives were forever changed.
For a couple of years, Curtis and I have discussed adoption. We've questioned baby or toddler; child with or without a disability; foster to adopt through child protective services or adopt through an agency. We never quite decided on anything. I prayed many times for God to just place something in my lap. As it turns out, that's exactly what He did. We didn't have to have answers to any of our questions because He made the decision for us. (Not that I didn't question His plan...don't we always tend to initially question Him when we're uncertain?)
Jordan comes to us from a family member. In order to respect the privacy of all parties involved, I won't go into the details. Suffice it to say, we have known Jordan since he was born, although we (Curtis and I) have not spent a lot of time with him to date. However, he and Wade have been together a lot, and they get along well.
We are beginning the process of a formal adoption. Both the mom and the dad have to sign over their rights. Once this is done, they each have only ten days to change their mind. Because we are not immediate family, we have to go through home studies and background checks. After this is approved and Jordan has been in our home for six months, we can go before the judge and make this all legal.
The past month has been quite challenging and different for us. Our normal--raising a child with a disability--just got turned upside down. Going from having one child who is non-verbal and uses a wheelchair to another child who walks, runs and talks quite well is...interesting! One is not harder or easier than the other; they both have their unique challenges. One of my least favorite things to do is feed Wade. It seems to take forever! Seriously, I'd rather clean the toilets! It's so nice to be able to put a plate of food in front of Jordan and he can feed himself every.last.bite. On the other hand, Jordan can make our house look like a tornado just went through in a matter of minutes. We've never had to worry about stepping on toys in the middle of the night before. It's actually quite a nice balance. I don't feel so locked in "disability world" now that we have Jordan; I have a healthy balance of both worlds. I'd be lying if I said it doesn't hurt my heart a bit to see Jordan running and playing and asking all those curious questions that I know are running through Wade's head. But thankfully, those thoughts only last a brief moment as I watch Wade laughing at all the silly things Jordan does. I also know that Jordan is going to be a more accepting and considerate person growing up in our home as Wade's new brother.
We decided that the boys would share a room, so we invested in bunk beds; a twin over a double. We've been having a lot of trouble with Wade sleeping through the night since he got his g-tube last June. After months and months of MANY middle of the night trips to reposition Wade and trying to figure out what was going on, I think we've discovered the problem--night time reflux. Since we were getting new beds, we decided to get a foam top mattress (similar to a tempurpedic bed) with an adjustable base so that we can incline the head and/or foot of the bed as well as set it to vibrate. Dare I say it out loud, but Wade has not woken up the past four nights!!! Jordan goes to bed a lot easier when it's time as well. He LOVES the top bunk!
We're still trying to get into the groove of things around here, but at least our house is finally put back together after switching bedrooms, putting down new carpet in the two bedrooms, selling some furniture and just reorganizing to make room for the new little guy! The first week was a little rough, to say the least. Jordan definitely tested his boundaries and limits, but it was amazing to see his transformation in just one week. We've gone from running off out in public, fighting bedtime, etc. to him telling me, "I don't want you to count to three," when he knows he's making the wrong choice. To be honest, while I knew this was the right decision, I did question whether or not I could love him as my own. It was my biggest concern, and I let his mom know this as well. But after just a few days with us, I knew it was possible. Jordan has filled a certain hole in my life that I didn't know I had. While it's not always easy, and we're learning how to raise a typical child as we go, our decision just feels right.
Oh! And for those who have caught on to his name...his first name is the same as our last name. We're not too sure what we're going to do about that. He certainly can't be Jordan Jordan for the rest of his life! But since that's our biggest worry at this point, I'd say we're truly blessed!
For a couple of years, Curtis and I have discussed adoption. We've questioned baby or toddler; child with or without a disability; foster to adopt through child protective services or adopt through an agency. We never quite decided on anything. I prayed many times for God to just place something in my lap. As it turns out, that's exactly what He did. We didn't have to have answers to any of our questions because He made the decision for us. (Not that I didn't question His plan...don't we always tend to initially question Him when we're uncertain?)
Jordan comes to us from a family member. In order to respect the privacy of all parties involved, I won't go into the details. Suffice it to say, we have known Jordan since he was born, although we (Curtis and I) have not spent a lot of time with him to date. However, he and Wade have been together a lot, and they get along well.
We are beginning the process of a formal adoption. Both the mom and the dad have to sign over their rights. Once this is done, they each have only ten days to change their mind. Because we are not immediate family, we have to go through home studies and background checks. After this is approved and Jordan has been in our home for six months, we can go before the judge and make this all legal.
The past month has been quite challenging and different for us. Our normal--raising a child with a disability--just got turned upside down. Going from having one child who is non-verbal and uses a wheelchair to another child who walks, runs and talks quite well is...interesting! One is not harder or easier than the other; they both have their unique challenges. One of my least favorite things to do is feed Wade. It seems to take forever! Seriously, I'd rather clean the toilets! It's so nice to be able to put a plate of food in front of Jordan and he can feed himself every.last.bite. On the other hand, Jordan can make our house look like a tornado just went through in a matter of minutes. We've never had to worry about stepping on toys in the middle of the night before. It's actually quite a nice balance. I don't feel so locked in "disability world" now that we have Jordan; I have a healthy balance of both worlds. I'd be lying if I said it doesn't hurt my heart a bit to see Jordan running and playing and asking all those curious questions that I know are running through Wade's head. But thankfully, those thoughts only last a brief moment as I watch Wade laughing at all the silly things Jordan does. I also know that Jordan is going to be a more accepting and considerate person growing up in our home as Wade's new brother.
We decided that the boys would share a room, so we invested in bunk beds; a twin over a double. We've been having a lot of trouble with Wade sleeping through the night since he got his g-tube last June. After months and months of MANY middle of the night trips to reposition Wade and trying to figure out what was going on, I think we've discovered the problem--night time reflux. Since we were getting new beds, we decided to get a foam top mattress (similar to a tempurpedic bed) with an adjustable base so that we can incline the head and/or foot of the bed as well as set it to vibrate. Dare I say it out loud, but Wade has not woken up the past four nights!!! Jordan goes to bed a lot easier when it's time as well. He LOVES the top bunk!
We're still trying to get into the groove of things around here, but at least our house is finally put back together after switching bedrooms, putting down new carpet in the two bedrooms, selling some furniture and just reorganizing to make room for the new little guy! The first week was a little rough, to say the least. Jordan definitely tested his boundaries and limits, but it was amazing to see his transformation in just one week. We've gone from running off out in public, fighting bedtime, etc. to him telling me, "I don't want you to count to three," when he knows he's making the wrong choice. To be honest, while I knew this was the right decision, I did question whether or not I could love him as my own. It was my biggest concern, and I let his mom know this as well. But after just a few days with us, I knew it was possible. Jordan has filled a certain hole in my life that I didn't know I had. While it's not always easy, and we're learning how to raise a typical child as we go, our decision just feels right.
Oh! And for those who have caught on to his name...his first name is the same as our last name. We're not too sure what we're going to do about that. He certainly can't be Jordan Jordan for the rest of his life! But since that's our biggest worry at this point, I'd say we're truly blessed!
Tuesday, November 6, 2012
Our Vision for Wade
It's been a long time. A really long time. I've had a lot of great things to post about, but the not so great things have invaded my thoughts and my time. I hope to get back to blogging soon, but for now, I thought I'd share our vision for Wade. I think it's so important to have a vision that is written down that can be shared with others. This way everyone knows what your expectations are. When you're questioning certain decisions, you can look back at your vision and ask yourself what is going to best help you accomplish this vision.
I've known about vision statements and student portfolios for awhile now. I talk about their importance and encourage others to come up with a vision for their own children. I've just failed to sit down and write one myself. But as always seems to happen, I found myself in a position where I really needed a vision. I needed a way to articulate to those who are in the position of educating Wade what we want and expect for him. I shared this vision with everyone at the table at our most recent ARD meeting last week, and I plan on reading it before every ARD meeting in the future. I think it's a quick and easy reminder about why we are gathered at the table and who we are there for; we are there for Wade.
For more information about vision statements and student portfolios, visit Texas Project First. They have some sample portfolio pages. I used wording from a few different samples and molded them into our vision for Wade.
I've known about vision statements and student portfolios for awhile now. I talk about their importance and encourage others to come up with a vision for their own children. I've just failed to sit down and write one myself. But as always seems to happen, I found myself in a position where I really needed a vision. I needed a way to articulate to those who are in the position of educating Wade what we want and expect for him. I shared this vision with everyone at the table at our most recent ARD meeting last week, and I plan on reading it before every ARD meeting in the future. I think it's a quick and easy reminder about why we are gathered at the table and who we are there for; we are there for Wade.
For more information about vision statements and student portfolios, visit Texas Project First. They have some sample portfolio pages. I used wording from a few different samples and molded them into our vision for Wade.
Our Vision for Wade
We have a vision for
Wade; a vision that goes far beyond the walls of a school building. Our vision started out pretty simple,
for Wade to be included. As the
years have flown by our vision has begun to evolve into something even bigger. Not only do we want Wade to be included
in his school, neighborhood, and community, we also want him to be a
contributing and active participant in his own life.
It is also important to
us that Wade be surrounded by people who love, support, and care for him in a
way that fosters his independence without creating a sense of “learned
helplessness”. We want Wade to be
a part of a community where differences are accepted and attempts are made to
educate those who may be fearful or ignorant with regard to the culture of
disability. We believe that
language and words are powerful and see value in using People First Language
where Wade as a person is put before his disabilities. By modeling this language, we are
attempting to eliminate the prejudice that surrounds those who have a
disability while encouraging others to see past the disability. Wade is the amazing little boy he is
because of his cerebral palsy; it is a part of him, but it does not define him.
As Wade’s parents, we
are an integral part of the team that supports him and his education. It is vital that the lines of
communication remain open and that the staff working with Wade support our
vision for him. We cannot do this
alone. It will take all of us
working together to make school a place where Wade can be successful and thrive
both academically and socially.
Comanche Springs Elementary is part of the foundation Wade needs in
order for him to achieve whatever dreams he desires. We are confident that when given the same opportunities as
every other child, Wade will find his voice and be successful in school,
community, and life.
“My
identity is the product of my history. My history is that of a person with
cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be
someone else. Frankly, I like who I am, I like my history, I like my life. I'm
not sure I'd sacrifice who I am for the sake of normal movement and speech.” ~
Norman Kunc
Sunday, April 8, 2012
Take Me Out to the Ballgame
Wade is having a blast playing t-ball. We've had games three Saturdays now, including a double header last Saturday. Those little players were certainly worn out by the time it was all said and done! We've been using a little trial and error to determine the best and easiest equipment to use while on the field. The KidWalk gait trainer is my favorite because it allows Wade to be in a standing position. When the fans are cheering, his little feet just start moving. He doesn't go anywhere, but you can tell he sure would like to!
Unfortunately, by the end of the game, Wade is a little tired and cranky from standing in it. It's a good thing we have options.
When Wade gets tired, sitting in his wheelchair does wonders for his mood. When he's in his wheelchair, he doesn't have to work as hard, and he can relax a little. The problem with the wheelchair is it is a bit front/top heavy with the small front casters and big rear wheels. (we're in the process of finding a solution) There's also a hole on first base line in the grass that you really can't see. We've had a few near misses and close face plants! But a few scrapes and bruises are good for the soul, right?
This past Saturday, we decided to try his adaptive stroller in place of his wheelchair when he was tired of the KidWalk. I think this is a pretty good option because of the stability and ease of pushing.
My dear friend also volunteered her son to be Wade's t-ball buddy. Elliot graciously agreed:-) He's so kind and good with Wade. But he has good practice since he's a wonderful older brother to two siblings. It means a lot that he's willing to give up his Saturday mornings to help us.
Wade also has his fair share of fans. I've talked about our neighborhood family before, and several neighbors have shown up to cheer Wade from the sidelines. Of course his uncle and grandparents have been in the stands as well. We are so amazingly blessed to have such a great support system. It makes "stepping outside of the box" with Wade a little bit easier.
Last Tuesday, instead of practice, we had to meet for team pictures. Afterwards, we went to a local pizza place for dinner. I took a change of clothes for Wade, but when I asked him if he wanted to change, he shook his head no. When we asked if he wanted to stay in his baseball uniform, he raised his eyebrows and "nodded" his head--his sign for "yes". I'm glad I listened to him because as we were finishing up, the family of one of Wade's teammates walked in, and the little boy was still dressed in his uniform. I heard him say, "Mom, I want to go tell Wade hi!" My heart about leaped out of my chest at the confirmation that Wade was accepted. This little boy came over and held up his hand to give Wade a high five. I helped Wade slap his hand as he giggled and grinned. The little boy went back and said, "Wade gave me a high five!" And this, my friends, is what it's all about. Community. Acceptance. Friendship.
Sunday, August 21, 2011
I'm Tired
I originally started this post on Monday, August 1. It's now Sunday, August 22! Right in the middle of it, I got a phone call from Curtis telling me that his doctor was admitting him to the hospital for two blood clots in his right thigh. I'm thrilled to report that, after a three week recovery (4 nights in the hospital and the remainder at home), Curtis is doing much better, and will be returning to work tomorrow. I find it quite ironic that I was writing a post about being tired. The past three weeks just added another element to my already challenging routine! I was going to delete it and start fresh, but as I reread the post, I realized my feelings haven't changed much. In fact, the mental and emotional fatigue has reached a new level with the start of school tomorrow. I'll hopefully address those aspects in a few days. Until then, I just want to close this post out and fill in the blanks later.
I'm tired. I'm physically, mentally, emotionally exhausted. I hate when I get to this point, and I typically try to keep it under wraps. But for some reason I want to share this time. Not to get pity, but so other families who have kids with disabilities know that they're not alone.
Spring was very, very busy in the Jordan household. Wade and I traveled to VA in March for his magnetic therapy where we stayed for two weeks. In April, we followed up with a trip to New Jersey for a week of intensive MEDEK therapy. In the midst of this, we were also preparing for his annual ARD and an assistive technology evaluation. I was on a constant "high", trying to get things done and keep everything straight. The end of the school year was right around the corner, but the stress of the ARD didn't let me enjoy it too much. We went to ARD in April and ended up asking for a new assistive technology evaluation because the first one wasn't done correctly. The school had six weeks to complete that and rewrite new goals and objectives, which meant our annual ARD was scheduled for the last week of school. Unfortunately, all members of the ARD still weren't seeing eye to eye at that meeting, so we closed it out and will have a new ARD at the beginning of this school year to write more appropriate goals and objectives. The bottom line--they recommended that Wade attended a general ed pre-K class next year instead of a self-contained special education class. I'm all for that. However, they didn't think we needed to address academic goals because they think he's in line cognitively with typical four years. I totally agree he knows a lot, but he's still not going to be able to access the curriculum the way a child without physical disabilities can. And for that reason, he needs goals and objectives to help him with this. Luckily the general ed teacher at the meeting agreed with me. There's also still the matter of communication. We will be starting the school year without a recommended device by the school. I am thrilled that they recognize how smart Wade is, but without a plan in place on how he is going to express this knowledge and access the curriculum, we're not going to get very far. Needless to say, we left the meeting with some things unresolved. Which means I have had all summer to dwell on what's going to happen in just a few weeks when school resumes.
So, that's where a lot of my mental exhaustion stems from; trying to make decisions for Wade that are in his best interest. Decisions that are going to set him up for success, not failure. Decisions that, even at the young age of four, can potentially affect the rest of his life. One thing that I don't think teachers understand is that the decisions that they are helping make for my child affect them (the teachers) for one year. After the school year is over, Wade will move on up to the next teacher. However, those same decisions affect Wade, as well as our family, forever. That's not to say that the decisions made by the teachers are done so lightly. I completely understand that they throw their heart and sole into their kiddos. But at the end of the day, they get to go home. As parents to a child with a disability, we never get a break. Which leads to my emotional fatigue.
My life forever changed on May 22, 2007. Never in a million years would I have dreamed that my time would be consumed with therapy appointments, doctor appointments, ARD meetings, advocacy meetings, etc. I thought these first years would be monopolized by play groups, mommy meet-ups, birthday parties, and fun outings. I thought my biggest concern would be which park we would go to on Saturday. The life that I thought I had so much control over came crashing down. This definitely isn't the life I would have chosen, but it is the life God gave me. I can honestly say that I wouldn't trade if for the world. However, that doesn't mean that I don't like it sometimes. That I don't wish I didn't have to worry about all the things I worry about. Even a simple task of running to the store can be an obstacle. I hope and pray that once I get to the store I can find an accessible place to park. Not so we don't have to walk as far to get to the door, but so I have a place to lower the wheelchair ramp so that Wade can get out of the van. Then I hope that the store is set up in a way that the aisles are big enough to navigate. In the midst of that thought, I try to figure out how I'm going to carry all of my purchases to the register without everything crashing to the floor.
I worry about things that I don't think I should really have to worry about right now. I know that every parent thinks about who will take care of their children if something were to happen to them. But it seems like a double whammy to me. My child comes with a lot of strings attached. It's hard to not think that his disability will be a burden on the person/people who will take care of him. Just from a financial standpoint, it's a burden. So, instead of just focusing on life insurance for us and a college savings account for him, I'm figuring out the best way to allocate money and adjusting his special needs trust so that even if he has money in his name through a trust, he can still qualify for other services before diving into that account. And besides the financial side, I have plans and visions and dreams for Wade. I'm willing to fight for them. I'm his mom. Someone else isn't going to have the same visions I do, and they're not going to have the same fight I have.
Then there's the whole emotional aspect of people looking at Wade as being "different". Sometimes I don't feel like going anywhere because I don't want to have to interact with people in public. Sometimes I try not to make eye contact because I don't want to see pity in people's eyes. I don't want the obligatory smile as I push Wade in his wheelchair. But whether I like it or not, I do it. It's good for Wade to be around people, and it's good for people to be around Wade. Quite honestly, Wade just attracts people. Every single time we go out, someone engages us in conversation, and Wade eats it up. He giggles and smiles and kicks his feet in excitement as he tries so hard to form some words. He's quite the social butterfly!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And that's where I left this blog nearly three weeks ago. I could elaborate more on the emotional exhaustion, but I'll leave that for some future posts! I'm sure with school starting tomorrow, I'll have tons to write about.
Just to skim the topic of physical exhaustion, Wade is heavy. Not because he weighs so much, but because he's dead weight. When you carry him, he doesn't support himself, so it's like carrying a sack of potatoes...or 10!!! Because of that, I'm worn out. We basically have to do everything for him. It's like having the needs of a baby in a four year old's body. In order to feed him, we have to carry him to the table. In order to bathe him, we have to carry him to the bath. In order to put him to bed, we have to lift him up. If he wants to play with toys, we have to help him. If he wants to use his iPad, we have to hold it. If he wants to get around the house/other environments, we have to carry him. Of course, he has adaptive equipment (wheelchairs, strollers, gait trainers, etc.) to assist him with these things, but we (Curtis and I) still have to do the majority of the work at this point. The list goes on and on. It takes a lot of upper body strength to care for Wade, and quite honestly, it's something I lack in! The truth of the matter is, he's only going to get bigger and heavier. At the end of the day, I can't wait to get to bed. Sometimes I even wake up in the mornings anxious for bedtime:-)
However, when it's all said and done--no matter how tired I am--this is my life, and I'm truly blessed. It's not always pretty or easy, but it's full of hope and inspiration and life lessons. Just this afternoon someone said, "I don't know how you do it." I think it's something parents of kids with disabilities hear quite often. Sometimes I don't know how I do it, but I just do. And you would too if you were me.
I'm tired. I'm physically, mentally, emotionally exhausted. I hate when I get to this point, and I typically try to keep it under wraps. But for some reason I want to share this time. Not to get pity, but so other families who have kids with disabilities know that they're not alone.
Spring was very, very busy in the Jordan household. Wade and I traveled to VA in March for his magnetic therapy where we stayed for two weeks. In April, we followed up with a trip to New Jersey for a week of intensive MEDEK therapy. In the midst of this, we were also preparing for his annual ARD and an assistive technology evaluation. I was on a constant "high", trying to get things done and keep everything straight. The end of the school year was right around the corner, but the stress of the ARD didn't let me enjoy it too much. We went to ARD in April and ended up asking for a new assistive technology evaluation because the first one wasn't done correctly. The school had six weeks to complete that and rewrite new goals and objectives, which meant our annual ARD was scheduled for the last week of school. Unfortunately, all members of the ARD still weren't seeing eye to eye at that meeting, so we closed it out and will have a new ARD at the beginning of this school year to write more appropriate goals and objectives. The bottom line--they recommended that Wade attended a general ed pre-K class next year instead of a self-contained special education class. I'm all for that. However, they didn't think we needed to address academic goals because they think he's in line cognitively with typical four years. I totally agree he knows a lot, but he's still not going to be able to access the curriculum the way a child without physical disabilities can. And for that reason, he needs goals and objectives to help him with this. Luckily the general ed teacher at the meeting agreed with me. There's also still the matter of communication. We will be starting the school year without a recommended device by the school. I am thrilled that they recognize how smart Wade is, but without a plan in place on how he is going to express this knowledge and access the curriculum, we're not going to get very far. Needless to say, we left the meeting with some things unresolved. Which means I have had all summer to dwell on what's going to happen in just a few weeks when school resumes.
So, that's where a lot of my mental exhaustion stems from; trying to make decisions for Wade that are in his best interest. Decisions that are going to set him up for success, not failure. Decisions that, even at the young age of four, can potentially affect the rest of his life. One thing that I don't think teachers understand is that the decisions that they are helping make for my child affect them (the teachers) for one year. After the school year is over, Wade will move on up to the next teacher. However, those same decisions affect Wade, as well as our family, forever. That's not to say that the decisions made by the teachers are done so lightly. I completely understand that they throw their heart and sole into their kiddos. But at the end of the day, they get to go home. As parents to a child with a disability, we never get a break. Which leads to my emotional fatigue.
My life forever changed on May 22, 2007. Never in a million years would I have dreamed that my time would be consumed with therapy appointments, doctor appointments, ARD meetings, advocacy meetings, etc. I thought these first years would be monopolized by play groups, mommy meet-ups, birthday parties, and fun outings. I thought my biggest concern would be which park we would go to on Saturday. The life that I thought I had so much control over came crashing down. This definitely isn't the life I would have chosen, but it is the life God gave me. I can honestly say that I wouldn't trade if for the world. However, that doesn't mean that I don't like it sometimes. That I don't wish I didn't have to worry about all the things I worry about. Even a simple task of running to the store can be an obstacle. I hope and pray that once I get to the store I can find an accessible place to park. Not so we don't have to walk as far to get to the door, but so I have a place to lower the wheelchair ramp so that Wade can get out of the van. Then I hope that the store is set up in a way that the aisles are big enough to navigate. In the midst of that thought, I try to figure out how I'm going to carry all of my purchases to the register without everything crashing to the floor.
I worry about things that I don't think I should really have to worry about right now. I know that every parent thinks about who will take care of their children if something were to happen to them. But it seems like a double whammy to me. My child comes with a lot of strings attached. It's hard to not think that his disability will be a burden on the person/people who will take care of him. Just from a financial standpoint, it's a burden. So, instead of just focusing on life insurance for us and a college savings account for him, I'm figuring out the best way to allocate money and adjusting his special needs trust so that even if he has money in his name through a trust, he can still qualify for other services before diving into that account. And besides the financial side, I have plans and visions and dreams for Wade. I'm willing to fight for them. I'm his mom. Someone else isn't going to have the same visions I do, and they're not going to have the same fight I have.
Then there's the whole emotional aspect of people looking at Wade as being "different". Sometimes I don't feel like going anywhere because I don't want to have to interact with people in public. Sometimes I try not to make eye contact because I don't want to see pity in people's eyes. I don't want the obligatory smile as I push Wade in his wheelchair. But whether I like it or not, I do it. It's good for Wade to be around people, and it's good for people to be around Wade. Quite honestly, Wade just attracts people. Every single time we go out, someone engages us in conversation, and Wade eats it up. He giggles and smiles and kicks his feet in excitement as he tries so hard to form some words. He's quite the social butterfly!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And that's where I left this blog nearly three weeks ago. I could elaborate more on the emotional exhaustion, but I'll leave that for some future posts! I'm sure with school starting tomorrow, I'll have tons to write about.
Just to skim the topic of physical exhaustion, Wade is heavy. Not because he weighs so much, but because he's dead weight. When you carry him, he doesn't support himself, so it's like carrying a sack of potatoes...or 10!!! Because of that, I'm worn out. We basically have to do everything for him. It's like having the needs of a baby in a four year old's body. In order to feed him, we have to carry him to the table. In order to bathe him, we have to carry him to the bath. In order to put him to bed, we have to lift him up. If he wants to play with toys, we have to help him. If he wants to use his iPad, we have to hold it. If he wants to get around the house/other environments, we have to carry him. Of course, he has adaptive equipment (wheelchairs, strollers, gait trainers, etc.) to assist him with these things, but we (Curtis and I) still have to do the majority of the work at this point. The list goes on and on. It takes a lot of upper body strength to care for Wade, and quite honestly, it's something I lack in! The truth of the matter is, he's only going to get bigger and heavier. At the end of the day, I can't wait to get to bed. Sometimes I even wake up in the mornings anxious for bedtime:-)
However, when it's all said and done--no matter how tired I am--this is my life, and I'm truly blessed. It's not always pretty or easy, but it's full of hope and inspiration and life lessons. Just this afternoon someone said, "I don't know how you do it." I think it's something parents of kids with disabilities hear quite often. Sometimes I don't know how I do it, but I just do. And you would too if you were me.
Saturday, July 16, 2011
A Dad's Perspective
For the June issue of our local Arc Chapter's monthly newsletter--The Arc of NE Tarrant County--Curtis was asked to write an article. I was going to share it on Father's Day and forgot! Then, I was going to share it last Saturday in honor of our six year wedding anniversary to show what an awesome dad he is. Believe it or not, I forgot again:-) So, here it is. I hope you enjoy.
Through a Father’s Eyes…
As we celebrate Wade’s birthday, I reflect on the last four years. As I look back on the rollercoaster of events and emotions, I find myself thinking of the lessons I have learned. At the beginning of Wade’s life, I was full of motivation and optimism. The first year was the hardest for Jenny and the easiest for me. I was focused on supporting her and not so much on the road ahead of us. I think it was a comfortable state of denial; it was definitely easier for me to plow though it than dealing with where we were. Then the reality came over me like a storm. I can’t tell you what caused it, but all of a sudden I woke up angry and frustrated with the cards that God had dealt me. I found myself turning away from God and Wade. I have always been a guy that could make something out of nothing, but this time I ran out of options and had nowhere to turn. I wasn’t as interested in his life, and I lost all motivation to press on. I wanted out.
One night I was watching Extreme Home Makeover. There was the typical family that the people of ABC were helping out, but this time they also focused on the people of the community that had stepped up to help the family. There was a gentleman they interviewed who owned a coffee shop in the local town who only hired people with disabilities. He also had cerebral palsy, and he wanted to show the rest of the world that people with disabilities can contribute to society. I remember watching this show and crying my eyes out because I was full of guilt. Here was a man who didn’t use his disability as a crutch in life. He used it more of a motivation tool to help others and himself spread awareness and hope to encourage people to overlook the disability and actually see what people CAN do and not so much what they CAN’T. I realized that what was holding Wade back were the voices in my head telling me that he would never do the things that a typical child could. I put an emotional fence around him to protect us from his disability. If I kept telling myself that he would never be able to do certain things, it wouldn’t hurt as much when we didn’t get to do them, and therefore we wouldn’t even have to try. I failed Wade by not letting him tell me what he could and couldn’t do. I was the one in his way. I was the one holding him back. I was the one trying to protect him instead of allowing him to succeed in life through his trials. We all fail at things. There will always be things in life that he is not going to be the best at. There will always be things that he may never be able to do. But standing in his way is not doing anything but holding him back.
The main thing I learned in this adventure is to get out of his way! Get behind him instead of in front of him. Push him to be the best at whatever it is that he wants to do in life. This isn’t denial anymore, or even over optimism. It’s more of a realization of the fact that there are going to be obstacles. But instead of failing before he tries, we’re going to learn how to ride this roller coaster of life together. Wade will be successful in life, AS LONG AS I STAY OUT OF HIS WAY.
Through a Father’s Eyes…
As we celebrate Wade’s birthday, I reflect on the last four years. As I look back on the rollercoaster of events and emotions, I find myself thinking of the lessons I have learned. At the beginning of Wade’s life, I was full of motivation and optimism. The first year was the hardest for Jenny and the easiest for me. I was focused on supporting her and not so much on the road ahead of us. I think it was a comfortable state of denial; it was definitely easier for me to plow though it than dealing with where we were. Then the reality came over me like a storm. I can’t tell you what caused it, but all of a sudden I woke up angry and frustrated with the cards that God had dealt me. I found myself turning away from God and Wade. I have always been a guy that could make something out of nothing, but this time I ran out of options and had nowhere to turn. I wasn’t as interested in his life, and I lost all motivation to press on. I wanted out.
One night I was watching Extreme Home Makeover. There was the typical family that the people of ABC were helping out, but this time they also focused on the people of the community that had stepped up to help the family. There was a gentleman they interviewed who owned a coffee shop in the local town who only hired people with disabilities. He also had cerebral palsy, and he wanted to show the rest of the world that people with disabilities can contribute to society. I remember watching this show and crying my eyes out because I was full of guilt. Here was a man who didn’t use his disability as a crutch in life. He used it more of a motivation tool to help others and himself spread awareness and hope to encourage people to overlook the disability and actually see what people CAN do and not so much what they CAN’T. I realized that what was holding Wade back were the voices in my head telling me that he would never do the things that a typical child could. I put an emotional fence around him to protect us from his disability. If I kept telling myself that he would never be able to do certain things, it wouldn’t hurt as much when we didn’t get to do them, and therefore we wouldn’t even have to try. I failed Wade by not letting him tell me what he could and couldn’t do. I was the one in his way. I was the one holding him back. I was the one trying to protect him instead of allowing him to succeed in life through his trials. We all fail at things. There will always be things in life that he is not going to be the best at. There will always be things that he may never be able to do. But standing in his way is not doing anything but holding him back.
The main thing I learned in this adventure is to get out of his way! Get behind him instead of in front of him. Push him to be the best at whatever it is that he wants to do in life. This isn’t denial anymore, or even over optimism. It’s more of a realization of the fact that there are going to be obstacles. But instead of failing before he tries, we’re going to learn how to ride this roller coaster of life together. Wade will be successful in life, AS LONG AS I STAY OUT OF HIS WAY.
Wednesday, February 9, 2011
There's a Light At the End of the Tunnel
I don't often go through the days thinking about the beginning of this journey with Wade. Every now and again, I'll see a picture or smell a scent that will jog my memory and make me stop for a minute. There are certain things that will immediately take me back to the hospital. The sanitizing soap they used in the NICU is a very powerful trigger. When I smell it, my stomach automatically flips. I still can't drive downtown around Cook Children's without my heart pumping just a little bit faster. But for the most part, I focus on the present and all the strides Wade has made. However, the past couple of weeks have caused me to relive some of those very terrifying and heartbreaking moments.
Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...
Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."
I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.
I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3
None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.
The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.
*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.
Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...
Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."
I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.
I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3
None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.
The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.
*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.
Wednesday, January 12, 2011
The Power of a Head Nod
For a very long time now, Wade has been very confident in his ability to communicate "no". Isn't every toddler?!?! He gets this little look on his face and adamantly shakes his head "no". It's very cute, and he definitely gets his point across. Sometimes the head shaking is also in conjunction with a high pitched squeal which definitely has the ability of getting under your skin very quickly! The problem? He answered "no" for everything! Even when asked if he wanted something I definitely knew he wanted, he still replied with shaking his head "no". That would then inevitably lead to frustration because he really did want the item he was shaking his head "no" to!
My theory--and as a parent to a child with special needs, I have a lot--is that his neck wasn't strong enough to nod "yes". He hadn't yet perfected a way to nod "yes" in a way that it didn't take so much effort and muscle strength. To nod "yes", you have to move your head up and down a few times to get your point across. Moving down was the easy part. The difficult part was getting his head back up as quick as it went down. Wade's a pretty smart cookie, so I knew that he really understood the difference between "yes" and "no". In fact, I'd be willing to bet that if I really took the time to study the way he shook his head "no", there was probably a slight difference in the way he shook it depending on whether he meant yes or no. Unfortunately, in the moment, it's pretty hard to take the time to study the head shake as you're also trying to prevent a tantrum because of frustration.
But thank goodness we no longer have to figure it out or study the situation. While we were in VA for the holidays, Wade discovered a way to say "yes" with a very slight head nod up and down. A lot of times, he also raises his eyebrows just a bit to really get his point across. Then the best part is he'll grin because he's so impressed with himself when we understand what he wants! It's amazing how much easier our lives have become in the past two weeks, all because of a simple head nod! It's these tiny, little things in life that we typically take for granted that mean the world to us. I never dreamed that having a three year old nod "yes" would be one of the biggest highlights of my life. Funny thing is, these little strides make me sit back and really appreciate the gift we've been given. Would I *choose* for my child to have cerebral palsy? Absolutely not! If God came to me today and told me he could change it all and take away every single symptom related to cerebral palsy, would I agree? Absolutely not! Cerebral palsy does not define Wade, but it has certainly made him the person he is today. Cerebral palsy has made ME the person I am today, and I look forward to the many blessings that will come from parenting one of the most amazing kids in the world!
On a side note, the iPad has been and continues to be, our go to device for understanding Wade. However, the iPad isn't always at arms reach. Sometimes you just need a quick answer without having to go through a computer.
My theory--and as a parent to a child with special needs, I have a lot--is that his neck wasn't strong enough to nod "yes". He hadn't yet perfected a way to nod "yes" in a way that it didn't take so much effort and muscle strength. To nod "yes", you have to move your head up and down a few times to get your point across. Moving down was the easy part. The difficult part was getting his head back up as quick as it went down. Wade's a pretty smart cookie, so I knew that he really understood the difference between "yes" and "no". In fact, I'd be willing to bet that if I really took the time to study the way he shook his head "no", there was probably a slight difference in the way he shook it depending on whether he meant yes or no. Unfortunately, in the moment, it's pretty hard to take the time to study the head shake as you're also trying to prevent a tantrum because of frustration.
But thank goodness we no longer have to figure it out or study the situation. While we were in VA for the holidays, Wade discovered a way to say "yes" with a very slight head nod up and down. A lot of times, he also raises his eyebrows just a bit to really get his point across. Then the best part is he'll grin because he's so impressed with himself when we understand what he wants! It's amazing how much easier our lives have become in the past two weeks, all because of a simple head nod! It's these tiny, little things in life that we typically take for granted that mean the world to us. I never dreamed that having a three year old nod "yes" would be one of the biggest highlights of my life. Funny thing is, these little strides make me sit back and really appreciate the gift we've been given. Would I *choose* for my child to have cerebral palsy? Absolutely not! If God came to me today and told me he could change it all and take away every single symptom related to cerebral palsy, would I agree? Absolutely not! Cerebral palsy does not define Wade, but it has certainly made him the person he is today. Cerebral palsy has made ME the person I am today, and I look forward to the many blessings that will come from parenting one of the most amazing kids in the world!
On a side note, the iPad has been and continues to be, our go to device for understanding Wade. However, the iPad isn't always at arms reach. Sometimes you just need a quick answer without having to go through a computer.
Tuesday, November 2, 2010
A Tiny Needle With Huge Results
Last Thursday, Wade went in for his fourth round of Botox. I can't believe we've done it so often! Wade is such a trooper during the shots. He cries a little, but overall he does really well. We don't really know how badly it hurts. I think it's different for everyone. I read where some kids say it's painful and others say it's not so bad. Either way though, Wade gets a lot of shots each time, so at the very least, it's not pleasant.
*All of the pictures below are from last fall--Wade's second round of Botox.
The purpose of Botox is to help relax some of Wade's muscles; to reduce his tone, or tightness. The very first time, we saw pretty instant results. In the bathtub that very night, Wade's hands were fully open. He typically kept them fisted. I thought at first he was just still really relaxed from the loopy medicine he was given before the Botox. (Wade does not receive any anesthesia. They just give him some medicine to make him feel good--kind of like he's drunk. He still feels everything, but hopefully he won't remember the pain so he won't resist the shots in the future.) But the next morning, his hands were still really relaxed. I was impressed! Doc still doesn't believe we had results that quickly, even though we're not the only ones to report such quick and awesome results. I had to take pictures in to prove it to him:-) He seems to think it might be some kind of effect similar to acupuncture. I really don't care what it is. I'm just thrilled it works so quickly!
As time passes, everyone--therapists, doctors, teachers, etc.--assesses and talks about how we think the Botox is working and how it is affecting Wade's movement. One time--I think it was the second round--we injected a muscle in his shoulder area. We were attempting to encourage the muscles in his shoulder to help Wade reach forward--out in front of him--instead of out to the side, then around to the front. Well, the outcome was something similar to the little boy in the red snow suit in the movie "A Christmas Story"; where he is so bundled up he can't keep his arms down by his side. Wade's arms kinda stayed out to his side and they would kinda fly up when we tried to put them down. It made walking down the shoe aisle at Kohl's a little difficult:-) Wade was knocking all the boxes around on the shelves on each side of him. So needless to say, that is an area that we chose not to Botox the next go round. Apparently, Wade uses his tone in a positive way to keep his arms down. We've also come to the conclusion that Wade uses his tone to help him grip things with his hands as well. So sometimes the decisions on what to treat aren't that cut and dry. For instance, Wade tucks both of his thumbs pretty badly. The left one is always tucked because we didn't treat it last spring. The right one tucks on occasion. On Thursday, we weren't really sure what to do about the right thumb. Curtis and I were both afraid that if we didn't do anything, we'd be in the same position we were with the left thumb previously. But then we were afraid if we did treat it, he would loose the function for some of his fine motor skills because it would make his muscles too loose. We discussed with the doctor and compromised by going with a lower dosage. His grip is a little weaker, but I'm thinking it will be okay. We'll see what his OT says on Thursday.
Results from the Botox typically last about 2-4 months. We make appointments to get the injections every 6 months. Reason being is that the schedule for Botox is VERY full. We LOVE our neurologist, but apparently, so does everyone else:-) He is awesome at what he does, and he makes us feel so at ease. He actually really includes us in the decision making process. He is so intelligent but doesn't have that "God complex" that some doctors get. I have a feeling his wonderful nurse would knock him down a notch if he did! We know who really runs the show:-)
So right now, things are looking good! All the therapy, equipment, orthotic devices, and medication (Artane), in conjunction with the Botox, are yielding very good results. Wade's future is looking bright!
*All of the pictures below are from last fall--Wade's second round of Botox.
 |
| I'm really not holding his head down very hard. I'm singing "Wheels On the Bus" too. Not sure which he thinks is worse--the needle or my singing! |
The purpose of Botox is to help relax some of Wade's muscles; to reduce his tone, or tightness. The very first time, we saw pretty instant results. In the bathtub that very night, Wade's hands were fully open. He typically kept them fisted. I thought at first he was just still really relaxed from the loopy medicine he was given before the Botox. (Wade does not receive any anesthesia. They just give him some medicine to make him feel good--kind of like he's drunk. He still feels everything, but hopefully he won't remember the pain so he won't resist the shots in the future.) But the next morning, his hands were still really relaxed. I was impressed! Doc still doesn't believe we had results that quickly, even though we're not the only ones to report such quick and awesome results. I had to take pictures in to prove it to him:-) He seems to think it might be some kind of effect similar to acupuncture. I really don't care what it is. I'm just thrilled it works so quickly!
 |
| The loopy meds taking effect! |
 |
| Thumb tucked in the office before Botox. |
 |
| Results--the very next day. I can easily move his finger. Before, I would have to pry his hand open. |
 |
| Hand open on its own in a relaxed position. |
As time passes, everyone--therapists, doctors, teachers, etc.--assesses and talks about how we think the Botox is working and how it is affecting Wade's movement. One time--I think it was the second round--we injected a muscle in his shoulder area. We were attempting to encourage the muscles in his shoulder to help Wade reach forward--out in front of him--instead of out to the side, then around to the front. Well, the outcome was something similar to the little boy in the red snow suit in the movie "A Christmas Story"; where he is so bundled up he can't keep his arms down by his side. Wade's arms kinda stayed out to his side and they would kinda fly up when we tried to put them down. It made walking down the shoe aisle at Kohl's a little difficult:-) Wade was knocking all the boxes around on the shelves on each side of him. So needless to say, that is an area that we chose not to Botox the next go round. Apparently, Wade uses his tone in a positive way to keep his arms down. We've also come to the conclusion that Wade uses his tone to help him grip things with his hands as well. So sometimes the decisions on what to treat aren't that cut and dry. For instance, Wade tucks both of his thumbs pretty badly. The left one is always tucked because we didn't treat it last spring. The right one tucks on occasion. On Thursday, we weren't really sure what to do about the right thumb. Curtis and I were both afraid that if we didn't do anything, we'd be in the same position we were with the left thumb previously. But then we were afraid if we did treat it, he would loose the function for some of his fine motor skills because it would make his muscles too loose. We discussed with the doctor and compromised by going with a lower dosage. His grip is a little weaker, but I'm thinking it will be okay. We'll see what his OT says on Thursday.
Results from the Botox typically last about 2-4 months. We make appointments to get the injections every 6 months. Reason being is that the schedule for Botox is VERY full. We LOVE our neurologist, but apparently, so does everyone else:-) He is awesome at what he does, and he makes us feel so at ease. He actually really includes us in the decision making process. He is so intelligent but doesn't have that "God complex" that some doctors get. I have a feeling his wonderful nurse would knock him down a notch if he did! We know who really runs the show:-)
So right now, things are looking good! All the therapy, equipment, orthotic devices, and medication (Artane), in conjunction with the Botox, are yielding very good results. Wade's future is looking bright!
Friday, October 22, 2010
Seeing is Believing
Believe it or not, I've finally gotten around to posting some videos of Wade in his wheelchair. I have a bad habit of putting off things I think will take a lot of time. But really, how long does it take to upload some videos to YouTube and then post here??? So, without further ado, here we go!
This first clip is of Wade at therapy, the day he received his chair. He was a little apprehensive, but he hadn't sat in one in 6 months. Yes my friends, that's how long it took for insurance to process his chair!!!
This next clip is of Wade showing off his new skills to our friends. We are so lucky to have such a wide street that is not at all busy for him to practice. Because, it seems like A LOT of practicing is in our future!
This last clip is a little long, so feel free to do some fast forwarding! I would edit it a bit, but since it's taken me so long to even get these posted, I think I'll save that for another day!
Wade got his chair the last week of August. When we first tried it in the clinic, we had the head sensors set to just turn right and go forward. Once we got the chair home, being the anxious parents that we are, we decided to give Wade the ability to go left, right, and forward. We quickly learned that with these options, Wade's favorite thing to do was to spin in circles! Also, even though we live on a wide street, Wade always seemed to find the curb! Thank goodness for the remote stop that we hold onto for emergency situations. After talking to our wonderful therapists, we realized that all the directions were just too overwhelming to start out with. So now, the only option he has is forward. Once he learns to stop and go on demand, we'll add right and left back.
It's now been about 2 months, and he seems to be getting the hang of it. We take it to school everyday, so he has a lot of opportunity to use it. I can't wait until he is a lot more proficient with his chair. It's going to give him so much freedom!
This first clip is of Wade at therapy, the day he received his chair. He was a little apprehensive, but he hadn't sat in one in 6 months. Yes my friends, that's how long it took for insurance to process his chair!!!
This next clip is of Wade showing off his new skills to our friends. We are so lucky to have such a wide street that is not at all busy for him to practice. Because, it seems like A LOT of practicing is in our future!
This last clip is a little long, so feel free to do some fast forwarding! I would edit it a bit, but since it's taken me so long to even get these posted, I think I'll save that for another day!
Wade got his chair the last week of August. When we first tried it in the clinic, we had the head sensors set to just turn right and go forward. Once we got the chair home, being the anxious parents that we are, we decided to give Wade the ability to go left, right, and forward. We quickly learned that with these options, Wade's favorite thing to do was to spin in circles! Also, even though we live on a wide street, Wade always seemed to find the curb! Thank goodness for the remote stop that we hold onto for emergency situations. After talking to our wonderful therapists, we realized that all the directions were just too overwhelming to start out with. So now, the only option he has is forward. Once he learns to stop and go on demand, we'll add right and left back.
It's now been about 2 months, and he seems to be getting the hang of it. We take it to school everyday, so he has a lot of opportunity to use it. I can't wait until he is a lot more proficient with his chair. It's going to give him so much freedom!
Wednesday, May 26, 2010
Three Years Ago...
A new friend of mine sent me an email asking what happened during Wade's birth to require a helicopter ride to Cook Children's. She didn't know if she had missed the info in my blog or if I never really wrote it. I started this blog when Wade turned one in an effort to keep friends and family more up to date. Since most of them knew what happened during the birth, I guess I just failed to include that portion--a very important detail!!!--in my original postings. Now that things have settled down (i.e. I've gotten used to my new life) I'm trying to branch out and meet more people who share our daily struggles. As a result, I'm trying to blog more to again keep family and friends up to date, but to also educate, inform and share with others what our life is really like. So, in honor of Wade's birthday, I thought I'd do a quick recap and actually include his birth story.
Three years ago today, we recieved the official news that Wade did indeed suffer brain damage from the lack of oxygen during his traumatic birth. I can still remember the day like it was yesterday...
Rewind to Monday, May 21, 2007. Curtis and I spent the day watching TLC which included a few episodes of A Baby Story. I vividly remember telling Curtis that I did not want a C-section (which happened in at least one of the episodes) and him saying, "We'll do whatever we need to do." We left for Baylor Hosptial in Irving that evening where I was scheduled to be induced. They were to start cervadil that night, and start the pitocin the following morning. At the time, I was 41 weeks. I really wanted things to happen naturally, but my parents were flying in that night and the doctor said if the baby wasn't here by Friday, he would induce anyway. In an effort to not bore you with the details, I'll just say that things that night and into the early morning were pretty uneventful. Unknowingly, I was already having contractions when I got to the hospital. Throughout the night though, I could feel a lot more. I was a little naive and told the nurse that I was going to do things naturally. She quickly informed me that the hospital wasn't really "friendly" towards natural births as far as equipment and such. I would be hooked up to the machine so I couldn't walk through my contractions. There weren't any birthing balls, and I couldn't take a bath even though there was a huge tub in my room. I guess I should've looked into all of this ahead of time, but since it was my first pregnancy, I was pretty clueless on this type of thing. Tuesday morning after I showered, I consented to some pain meds, and the doctor eventually came in and talked me into an epidural telling me, "you don't need to be a hero." So, they gave me an epidural, my left leg kicked out, and things were pretty easy. I slept through pretty much everything.
The nurses assumed I would progress slowly, but by noon, I was ready to push. The room was cleared of visitors except for Curtis and my mom. My mom, at the very last moment, decided to stay. (Thank you God for those extra set of eyes and ears!!!!) I couldn't feel anything, and I remember snoring between pushes. (The whole reason I didn't want pain meds. I wanted to be aware of everything.) I also remember Curtis eating a sandwich between me pushing! Then, all of a sudden the atmosphere in the room totally changed. Even in my groggy state I knew things had gone down hill fast. I had a nurse up on my bed, I heard C-section, I was crying, and they wheeled me out of that room through some double doors. In the operating room they hurriedly removed my jewelry. The anesthesiologist was at my head repeating over and over "This isn't good. This isn't good." Wade was born at 2:31PM. I asked, "Why isn't my baby crying?"--I had watched enough episodes of The Baby Story to know that he should be crying by now. The anesthesiologist said, "It's okay. They just have their fingers in his mouth." What?!?! That didn't make me feel any better! Then I could hear them counting and "bagging" him, so I knew he wasn't breathing. I can remember thinking, how are we going to go home without a baby and tell everyone he didn't live? At some point, they got him stable--his apgar's were 0/3/3--and I was wheeled to recovery.
While I was in recovery, the team was prepping Wade for a helicopter transport to Cook Children's. Because of the type of trauma, he was a candidate for a new type of treatment--full body hypothermia, aka cooling blanket. The only hospital in the area that had this treatment for transfer patients was Cooks. The idea of the treatment was to drop the core body temperature down for 72 hours in an attempt to stop any further damage from occurring due to the loss of oxygen. It could not reverse any damage that had already happened, but hopefully it would stop further damage. Although the delivery hospital and Cooks are only about 45 minutes away from each other, since it was rush hour, they opted for the helicopter transport. I did get to see Wade for just a few minutes before they flew him away. I also got to touch his hand, and then I didn't see him for two and a half days as we were at separate hospitals. Over the course of the next few days, I learned that Wade had gotten "stuck" in the birth canal and the doctor tried a forcep delivery multiple times with no success. Since then, we have also learned that the pitocin was allegedly causing me to hyperstimulate, not giving Wade enough time to recover between the contractions.
I was discharged that Friday, May 25 and went straight to Cooks. I was not able to hold my sweet boy because he was intubated and still on the cooling blanket and had wires hooked up everywhere. That night we went back to the hospital so we could be there when they removed him from the blanket. That was quite the experience because right at the end, the blanket busted and water flowed everywhere!
Friday the doctors were all very positive about his prognosis. The EEG wasn't showing anymore seizure activity, and he seemed to be doing well. They were scheduling him for an MRI as soon as possible. Saturday morning we took our time getting to the hospital. Mom and Dad were also flying back to VA that afternoon. To our surprise, when we got back to the hospital, Wade was being returned from getting the MRI. The doctor told us he had the results. I knew in my heart of hearts that things weren't okay before he even said anything. I asked him, "Is it good or bad?" Dr. Nedrelow replied, "It's not good." He said he was very surprised at the results because everything else seemed to be okay. I don't remember much after that except to ask him to come to the waiting room so he could tell both of our parents. Dr. Nedrelow has the best bedside manner. He was very comforting and let all of us ask all kinds of questions. The neurologist however, was very matter of fact and gave us worse case scenario. According to him, Wade would be in a wheelchair for the rest of his life. He would not walk or talk. The area of the brain that was damaged put him at high risk for cerebral palsy, mental retardation and epilepsy. Because I am a special education teacher, I prayed everyday for God NOT to give me a child with special needs. I remember sobbing this to Curtis after we all left the waiting room. But God had different plans and knew what he was doing when he led me down the path to that career. He was preparing me for May 22, 2007.
Wade was in the NICU for 16 days. He wowed the doctors with his improvements. Dr. Nedrelow was off for a few days, and when he returned he was in shock. He called me and said, "I have one word for you. WOW! This is a different baby than the one I left a few days ago." I said, "Of course he is. He's on every prayer chain across the country!"
So, in the beginning, our outlook on things was very grim. Now, three years later, I think Wade has surpassed all of their initial expectations. What did I learn in the process? That most doctors are very intelligent and knowledgeable in their field. However, they don't know everything. They cannot predict the future or the outcomes. While I still value their opinions, I do not put them on pedestals as the end all, be all. They are humans. They make mistakes. They are NOT God. Only He knows what's in store for us. And while it is a very emotional and tiring road, it is full of laughter, smiles, and most of all, miracles!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."~Jeremiah 29:11
Three years ago today, we recieved the official news that Wade did indeed suffer brain damage from the lack of oxygen during his traumatic birth. I can still remember the day like it was yesterday...
Rewind to Monday, May 21, 2007. Curtis and I spent the day watching TLC which included a few episodes of A Baby Story. I vividly remember telling Curtis that I did not want a C-section (which happened in at least one of the episodes) and him saying, "We'll do whatever we need to do." We left for Baylor Hosptial in Irving that evening where I was scheduled to be induced. They were to start cervadil that night, and start the pitocin the following morning. At the time, I was 41 weeks. I really wanted things to happen naturally, but my parents were flying in that night and the doctor said if the baby wasn't here by Friday, he would induce anyway. In an effort to not bore you with the details, I'll just say that things that night and into the early morning were pretty uneventful. Unknowingly, I was already having contractions when I got to the hospital. Throughout the night though, I could feel a lot more. I was a little naive and told the nurse that I was going to do things naturally. She quickly informed me that the hospital wasn't really "friendly" towards natural births as far as equipment and such. I would be hooked up to the machine so I couldn't walk through my contractions. There weren't any birthing balls, and I couldn't take a bath even though there was a huge tub in my room. I guess I should've looked into all of this ahead of time, but since it was my first pregnancy, I was pretty clueless on this type of thing. Tuesday morning after I showered, I consented to some pain meds, and the doctor eventually came in and talked me into an epidural telling me, "you don't need to be a hero." So, they gave me an epidural, my left leg kicked out, and things were pretty easy. I slept through pretty much everything.
The nurses assumed I would progress slowly, but by noon, I was ready to push. The room was cleared of visitors except for Curtis and my mom. My mom, at the very last moment, decided to stay. (Thank you God for those extra set of eyes and ears!!!!) I couldn't feel anything, and I remember snoring between pushes. (The whole reason I didn't want pain meds. I wanted to be aware of everything.) I also remember Curtis eating a sandwich between me pushing! Then, all of a sudden the atmosphere in the room totally changed. Even in my groggy state I knew things had gone down hill fast. I had a nurse up on my bed, I heard C-section, I was crying, and they wheeled me out of that room through some double doors. In the operating room they hurriedly removed my jewelry. The anesthesiologist was at my head repeating over and over "This isn't good. This isn't good." Wade was born at 2:31PM. I asked, "Why isn't my baby crying?"--I had watched enough episodes of The Baby Story to know that he should be crying by now. The anesthesiologist said, "It's okay. They just have their fingers in his mouth." What?!?! That didn't make me feel any better! Then I could hear them counting and "bagging" him, so I knew he wasn't breathing. I can remember thinking, how are we going to go home without a baby and tell everyone he didn't live? At some point, they got him stable--his apgar's were 0/3/3--and I was wheeled to recovery.
While I was in recovery, the team was prepping Wade for a helicopter transport to Cook Children's. Because of the type of trauma, he was a candidate for a new type of treatment--full body hypothermia, aka cooling blanket. The only hospital in the area that had this treatment for transfer patients was Cooks. The idea of the treatment was to drop the core body temperature down for 72 hours in an attempt to stop any further damage from occurring due to the loss of oxygen. It could not reverse any damage that had already happened, but hopefully it would stop further damage. Although the delivery hospital and Cooks are only about 45 minutes away from each other, since it was rush hour, they opted for the helicopter transport. I did get to see Wade for just a few minutes before they flew him away. I also got to touch his hand, and then I didn't see him for two and a half days as we were at separate hospitals. Over the course of the next few days, I learned that Wade had gotten "stuck" in the birth canal and the doctor tried a forcep delivery multiple times with no success. Since then, we have also learned that the pitocin was allegedly causing me to hyperstimulate, not giving Wade enough time to recover between the contractions.
I was discharged that Friday, May 25 and went straight to Cooks. I was not able to hold my sweet boy because he was intubated and still on the cooling blanket and had wires hooked up everywhere. That night we went back to the hospital so we could be there when they removed him from the blanket. That was quite the experience because right at the end, the blanket busted and water flowed everywhere!
Friday the doctors were all very positive about his prognosis. The EEG wasn't showing anymore seizure activity, and he seemed to be doing well. They were scheduling him for an MRI as soon as possible. Saturday morning we took our time getting to the hospital. Mom and Dad were also flying back to VA that afternoon. To our surprise, when we got back to the hospital, Wade was being returned from getting the MRI. The doctor told us he had the results. I knew in my heart of hearts that things weren't okay before he even said anything. I asked him, "Is it good or bad?" Dr. Nedrelow replied, "It's not good." He said he was very surprised at the results because everything else seemed to be okay. I don't remember much after that except to ask him to come to the waiting room so he could tell both of our parents. Dr. Nedrelow has the best bedside manner. He was very comforting and let all of us ask all kinds of questions. The neurologist however, was very matter of fact and gave us worse case scenario. According to him, Wade would be in a wheelchair for the rest of his life. He would not walk or talk. The area of the brain that was damaged put him at high risk for cerebral palsy, mental retardation and epilepsy. Because I am a special education teacher, I prayed everyday for God NOT to give me a child with special needs. I remember sobbing this to Curtis after we all left the waiting room. But God had different plans and knew what he was doing when he led me down the path to that career. He was preparing me for May 22, 2007.
Wade was in the NICU for 16 days. He wowed the doctors with his improvements. Dr. Nedrelow was off for a few days, and when he returned he was in shock. He called me and said, "I have one word for you. WOW! This is a different baby than the one I left a few days ago." I said, "Of course he is. He's on every prayer chain across the country!"
So, in the beginning, our outlook on things was very grim. Now, three years later, I think Wade has surpassed all of their initial expectations. What did I learn in the process? That most doctors are very intelligent and knowledgeable in their field. However, they don't know everything. They cannot predict the future or the outcomes. While I still value their opinions, I do not put them on pedestals as the end all, be all. They are humans. They make mistakes. They are NOT God. Only He knows what's in store for us. And while it is a very emotional and tiring road, it is full of laughter, smiles, and most of all, miracles!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."~Jeremiah 29:11
Monday, May 10, 2010
And so it begins...
I've been off the blogging scene for almost two years now. I went through and deleted all of my old posts, but I kept the ones that pertained to Wade. I figure today is a good day to start recording our journey again because things are definitely changing. Starting with our first meeting to enroll for PPCD.
Our first meeting was scheduled for today at 1:00 with Eagle Mountain Saginaw ISD. We still are not 100% that Wade will attend PPCD in the fall, but I want to make sure I've researched all of our options in order to make the best decision. Since he turns 3 next Saturday, we have to get the ball rolling. Technically he can start school the day he turns 3, but since it's the end of the school year, we're definitely opting to wait until fall to begin.
Things did not start out on a very good foot. When the diagnostician came out to greet us, she told us that we were supposed to have brought Wade with us. Well, when I asked over the phone if there was anything we needed to bring to the meeting, she should've told me at that point! She said she assumed I would've known to bring him. First of all, even though I'm a special education teacher and I've sat in tons of ARDs, I've never had my own child go through the process. Second of all, it was never explained to me that this particular meeting was for evaluations. I thought it was for all the adults to discuss plans for Wade and evaluations would come later. After that little mishap was cleared up, we decided to proceed with the evaluations we could do without him. We now have to take him back Thursday morning so he can be assessed by the OT, PT, and speech therapist. Our ARD is now scheduled for this Friday at 3:15.
And so it begins. Our official start to the world of special education in the public school system. I have to honestly say, I'm NOT ready for this!
Our first meeting was scheduled for today at 1:00 with Eagle Mountain Saginaw ISD. We still are not 100% that Wade will attend PPCD in the fall, but I want to make sure I've researched all of our options in order to make the best decision. Since he turns 3 next Saturday, we have to get the ball rolling. Technically he can start school the day he turns 3, but since it's the end of the school year, we're definitely opting to wait until fall to begin.
Things did not start out on a very good foot. When the diagnostician came out to greet us, she told us that we were supposed to have brought Wade with us. Well, when I asked over the phone if there was anything we needed to bring to the meeting, she should've told me at that point! She said she assumed I would've known to bring him. First of all, even though I'm a special education teacher and I've sat in tons of ARDs, I've never had my own child go through the process. Second of all, it was never explained to me that this particular meeting was for evaluations. I thought it was for all the adults to discuss plans for Wade and evaluations would come later. After that little mishap was cleared up, we decided to proceed with the evaluations we could do without him. We now have to take him back Thursday morning so he can be assessed by the OT, PT, and speech therapist. Our ARD is now scheduled for this Friday at 3:15.
And so it begins. Our official start to the world of special education in the public school system. I have to honestly say, I'm NOT ready for this!
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