It's true: Time flies. (I haven't decided about the "when you're having fun part" yet, though.)
Can you believe we began this journey two years ago? Graden had his last full seizure in March -- two years ago! During that time, we have gradually found out what caused many of his traumas from birth to 3 years old. During 2012 alone, we have had more visits and tests than we have in the past 5 years of his entire life.
A week has passed, and we continue our therapy. At our "check-in" on Tuesday, we were told he was doing great with his exercises at home. While he worked/played with the therapist, she reminded him about little techniques until he was doing them on his own. It's bittersweet watching him do so well, be so grown up...
When we got home from therapy Tuesday, I received a phone call from our Pulmonologist asking if I could come in Wednesday (the next day!) at 11:20 for an appointment. I wasn't sure what to expect, because the nurse didn't give me any information. Needless to say, Phil and I both went, unsure of what to expect.
After a painful 24-hour wait, we arrived at the appointment, which lasted longer than many of our other visits. The Doc reviewed Graden's last month or so of files, test results, and current condition and informed us that he wanted to touch base and pursue the next steps now instead of waiting until after therapy (remember, our doctor at Riley is giving us until April 5th to see if we can see an improvement).
So, next Thursday we are doing that "sleep study" I mentioned in my last post. Graden and I will be spending the night at Lutheran so they can watch him overnight. Our doctor will be the one doing the test, and he will be looking for a "Central Apnea," which is defined as: when the part of the brain that controls breathing doesn't properly maintain the breathing process (cited here).
The doctor continued to inform us that because of Graden's minimal (but difficult) side effects from the Chiari, we need to determine if there are other concerns being caused by the malformation; one such issue would be the central apnea, which, combined with the aspiration, would be two major side effects and be grounds for surgery. If we do not notice any apnea - or slight - we may be able to report back in April at Riley that our therapy is working and no other issues have been produced (at this point) from the Chiari.
Obviously, we're are hoping for little-to-no apnea! As if I don't already worry, especially about the seizure activity he experiences, the thought of Graden not breathing while sleeping is horrifying.
The doctor also suggested we do a test with an ENT on Graden's vocal chords (which I'm pretty sure just fine -- the kid is LOUD) to be sure there is no pressure there like we've seen in his laryngeal muscles (swallowing).
Before we left, he calmly told us that this was not going away; even if we did the surgery, he wanted us to understand that the malformation would be there. And, worse yet, the surgery isn't a "cure all." We already knew, but that doesn't take the hurt away when we hear those words.
So, we're still at it... one day at a time, and that time is flying -- thankfully!
Thursday, February 14, 2013
Wednesday, February 6, 2013
The Therapy Begins.
Before I update you on Graden's newest task, I want to give a "shout out" to the people at Lutheran Hospital Outpatient Rehab. Two of the ladies that work as Speech Pathologists (maybe therapists - I always get them flip-flopped) gave Graden his Swallow Study test a month or so ago, and (I said it then, but I'll say it again) they were amazing. I've never had someone (in all our test-taking) explain to me so efficiently what they were doing while they were doing it. They were honest, friendly, and wonderful at their jobs.
None of those qualities changed when we visited yet a 3rd lady, who was recommended by our friend M (who also works with these ladies but is on maternity leave) and who is now Graden's Speech Therapist (or maybe Pathologist is her title... goodness, I need to find out). Instantly, she was addressing me but engaging Graden. She made sure both of us understood and felt comfortable with our new therapy procedures.
Can I just say right now that one of the best qualities of any medical personnel is to be confident in their work? Not the overly confident that borders arrogance... No, the confidence that would tell you they know what they're doing and if it doesn't work, they'll try something new or find someone who can help. Yep, that confidence works best for me. I'm sure if you skim previous blog posts, you will see that I've said it before.
So, our therapist taught Graden 4 exercises that he will now do 3-4 times a day, every day. We will check in with her each week to make sure he's doing them and that he doesn't become hoarse. It sounds like a lot, and, at first, I was worried. But, he's already started today and knows that if he does them right and they work, he won't have to use his "medicine" in his liquids anymore. :)
Originally, I thought we would be driving out to Lutheran several times a week, so I am quite thankful that we can do this on our own. I just hope Graden continues to be a good patient for his Mom. (We all know he can be quite the stinker!)
The therapist didn't seem positive or negative, which worried me at first, but now I realize I'm thankful. She was straight to the point -- we have to do this, and we have to do it right. Apparently (as my medical education continues), there are very few "tricks" to strengthening the muscles Graden needs help with, so it's more about frequency than duration. Meaning -- we do them a 3-4 times a day for a few minutes instead of once a day for 20 minutes. My theory? Whatever the heck works!
We go back next Tuesday to check in; please keep him in your thoughts. We have a few months, when we do a new Swallow Study, before we'll know if we're in the clear.
Additionally, his Neurologist wants to follow up with a Sleep Study to check his other brain concerns to see if they're changing/being affected while he sleeps. Did I mention his last test showed a bit more "seizure activity"? However, they want us to get through therapy first so nothing throws the test off. Fine by me -- one thing at a time.
Either way, Grado was a trooper yesterday and did everything she asked. Let's hope this little guy can keep it up!
--
In other news, we are all moved in to the in-laws' basement. We are comfortable and the boys are adjusting quickly. We have a few random things in the attic and closets at the old house, but we'll get them when it's warmer. Moving in the snow is ridiculous. :)
Hey, do you know anyone who wants to buy a 3-bedroom ranch? :)
None of those qualities changed when we visited yet a 3rd lady, who was recommended by our friend M (who also works with these ladies but is on maternity leave) and who is now Graden's Speech Therapist (or maybe Pathologist is her title... goodness, I need to find out). Instantly, she was addressing me but engaging Graden. She made sure both of us understood and felt comfortable with our new therapy procedures.
Can I just say right now that one of the best qualities of any medical personnel is to be confident in their work? Not the overly confident that borders arrogance... No, the confidence that would tell you they know what they're doing and if it doesn't work, they'll try something new or find someone who can help. Yep, that confidence works best for me. I'm sure if you skim previous blog posts, you will see that I've said it before.
So, our therapist taught Graden 4 exercises that he will now do 3-4 times a day, every day. We will check in with her each week to make sure he's doing them and that he doesn't become hoarse. It sounds like a lot, and, at first, I was worried. But, he's already started today and knows that if he does them right and they work, he won't have to use his "medicine" in his liquids anymore. :)
Originally, I thought we would be driving out to Lutheran several times a week, so I am quite thankful that we can do this on our own. I just hope Graden continues to be a good patient for his Mom. (We all know he can be quite the stinker!)
The therapist didn't seem positive or negative, which worried me at first, but now I realize I'm thankful. She was straight to the point -- we have to do this, and we have to do it right. Apparently (as my medical education continues), there are very few "tricks" to strengthening the muscles Graden needs help with, so it's more about frequency than duration. Meaning -- we do them a 3-4 times a day for a few minutes instead of once a day for 20 minutes. My theory? Whatever the heck works!
We go back next Tuesday to check in; please keep him in your thoughts. We have a few months, when we do a new Swallow Study, before we'll know if we're in the clear.
Additionally, his Neurologist wants to follow up with a Sleep Study to check his other brain concerns to see if they're changing/being affected while he sleeps. Did I mention his last test showed a bit more "seizure activity"? However, they want us to get through therapy first so nothing throws the test off. Fine by me -- one thing at a time.
Either way, Grado was a trooper yesterday and did everything she asked. Let's hope this little guy can keep it up!
--
In other news, we are all moved in to the in-laws' basement. We are comfortable and the boys are adjusting quickly. We have a few random things in the attic and closets at the old house, but we'll get them when it's warmer. Moving in the snow is ridiculous. :)
Hey, do you know anyone who wants to buy a 3-bedroom ranch? :)
Sharing in the Spotlight!
Before I begin my usual update, I felt the need to shine the spotlight on Landen a bit.
Landen is amazing; there are many ways I could describe him, but amazing covers it all.
While he is your typical 7 year old in that he loves to play (especially outside), he tries to avoid veggies as much as possible, and he likes to stay up late and sleep in if I let him, there are also many things that aren't so typical.
Landen is smart.
I know you're thinking that all moms think their child is smart, but he is smart in several ways. Sure, he gets good grades and is always on the honor roll list, but his brain also works in ways that are beyond his seven years. He asks questions about everything -- not in an annoying way. :) Instead, he really, truly wants to know how things work, what words mean, and why things happen. Very inquisitive! Shoot, he's even been watching the DIY Network for fun! :) I love watching him as he learns new things; his teacher says his reading skills are excellent (just like his Momma!).
Landen is sensitive.
Again, I know what you're thinking. He probably fits the stereotype of "momma's boy," and I don't care. In fact, I love it! I hope he continues to be sensitive despite the gender norms that will push him to be "tough." I love that he gets his patience from his dad and his constant caring from me. Although, I can see he will be a "worrier" like me, too. (Boo!) Landen smiles at everyone, is wonderful with kids both young and old, and knows how you feel before you even tell him. He's very observant, especially when it comes to feelings. Sometimes he is shy -- he certainly does not like all the attention on him, but he is also very personable. I do not worry about him in social settings at all!
Landen is athletic.
Yes, yes, here we go again... All moms think their kids are awesome. :) And, we do! But, I also know that he has been recognized as being a good baseball player, which seems to be his sport for the past few years. He loves being outside, playing anything really, and, although he loves to read, write, draw, and color, he loves to play, too! The best of both worlds in my eyes... Someday, I'm sure he will be in college playing sports and studying something hard. :) From a very early age, he was gifted with excellent hand-eye-coordination. Often, I find myself daydreaming about what he will do when he "grows up." (Not too soon, though; I'm not ready for him to be grown.)
Landen is loving, helpful, considerate, polite, outgoing, and funny... and I'm sure there are so many more adjectives, but I'll stop, because the most important thing he is... is mine! He is my baby. My oldest son. My firstborn. My friend. Can you believe at 7 he is already my friend? Well, he is. He checks in on me, worries about me, wants to know how I am (especially on days when Graden has appointments), and loves me -- even when I'm crazy. :)
In the last two weeks, Landen has come home with 2 "Caught Being Good" notes, 1 Bowling Award (for being the top boy bowler in first grade), 1 Character Counts Award for Trustworthiness, an email from his teacher, and an excellent parent-teacher conference... And, again, that's only in TWO WEEKS! :)
Sometimes I worry that I'm not showing him enough attention when I'm worried about Graden, or quite honestly too tired to "deal" with him after a long day, and I know that isn't fair. So, I know, too, that I try to overcompensate and "brag" a little to my family about how awesome he is, and luckily, they don't mind. :) Deep down, though, I know that this kid is tough in a different way than Graden. He is "tough" for me, supportive in more ways than he may even realize. No, Landen would not do well if he were the one "sick" like Graden; he would worry constantly. Graden, however, can handle it, and Landen is the "support." Their relationship is becoming stronger and stronger despite the "brotherly fights" that happen here and there. :)
It's amazing that I was blessed with two little men who handle everything life gives them with grace, ease, and humor. As their mom, I honestly learn from them every single day and worry that someday my heart my burst with pride.
--
Disclaimer: Please don't take this post as me believing that Landen is better than anyone else's child. Goodness knows I love all "my kids" - biological or not. I just had to share why Landen is perfect for me!
Landen is amazing; there are many ways I could describe him, but amazing covers it all.
While he is your typical 7 year old in that he loves to play (especially outside), he tries to avoid veggies as much as possible, and he likes to stay up late and sleep in if I let him, there are also many things that aren't so typical.
Landen is smart.
I know you're thinking that all moms think their child is smart, but he is smart in several ways. Sure, he gets good grades and is always on the honor roll list, but his brain also works in ways that are beyond his seven years. He asks questions about everything -- not in an annoying way. :) Instead, he really, truly wants to know how things work, what words mean, and why things happen. Very inquisitive! Shoot, he's even been watching the DIY Network for fun! :) I love watching him as he learns new things; his teacher says his reading skills are excellent (just like his Momma!).
Landen is sensitive.
Again, I know what you're thinking. He probably fits the stereotype of "momma's boy," and I don't care. In fact, I love it! I hope he continues to be sensitive despite the gender norms that will push him to be "tough." I love that he gets his patience from his dad and his constant caring from me. Although, I can see he will be a "worrier" like me, too. (Boo!) Landen smiles at everyone, is wonderful with kids both young and old, and knows how you feel before you even tell him. He's very observant, especially when it comes to feelings. Sometimes he is shy -- he certainly does not like all the attention on him, but he is also very personable. I do not worry about him in social settings at all!
Landen is athletic.
Yes, yes, here we go again... All moms think their kids are awesome. :) And, we do! But, I also know that he has been recognized as being a good baseball player, which seems to be his sport for the past few years. He loves being outside, playing anything really, and, although he loves to read, write, draw, and color, he loves to play, too! The best of both worlds in my eyes... Someday, I'm sure he will be in college playing sports and studying something hard. :) From a very early age, he was gifted with excellent hand-eye-coordination. Often, I find myself daydreaming about what he will do when he "grows up." (Not too soon, though; I'm not ready for him to be grown.)
Landen is loving, helpful, considerate, polite, outgoing, and funny... and I'm sure there are so many more adjectives, but I'll stop, because the most important thing he is... is mine! He is my baby. My oldest son. My firstborn. My friend. Can you believe at 7 he is already my friend? Well, he is. He checks in on me, worries about me, wants to know how I am (especially on days when Graden has appointments), and loves me -- even when I'm crazy. :)
In the last two weeks, Landen has come home with 2 "Caught Being Good" notes, 1 Bowling Award (for being the top boy bowler in first grade), 1 Character Counts Award for Trustworthiness, an email from his teacher, and an excellent parent-teacher conference... And, again, that's only in TWO WEEKS! :)
Sometimes I worry that I'm not showing him enough attention when I'm worried about Graden, or quite honestly too tired to "deal" with him after a long day, and I know that isn't fair. So, I know, too, that I try to overcompensate and "brag" a little to my family about how awesome he is, and luckily, they don't mind. :) Deep down, though, I know that this kid is tough in a different way than Graden. He is "tough" for me, supportive in more ways than he may even realize. No, Landen would not do well if he were the one "sick" like Graden; he would worry constantly. Graden, however, can handle it, and Landen is the "support." Their relationship is becoming stronger and stronger despite the "brotherly fights" that happen here and there. :)
It's amazing that I was blessed with two little men who handle everything life gives them with grace, ease, and humor. As their mom, I honestly learn from them every single day and worry that someday my heart my burst with pride.
--
Disclaimer: Please don't take this post as me believing that Landen is better than anyone else's child. Goodness knows I love all "my kids" - biological or not. I just had to share why Landen is perfect for me!
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