When things begin to fall into place, you feel like this was a meant to be moment.
That happened this week to me!
I'm a member of a group of families fighting for more awareness of Acute Flaccid Myelitis. It's an amazing group of people looking to support each other, help get answers and reach for ways to make this more known for more answers.
Well the group hit it big this year. News sources across the country finally took notice. Many of us had the chance to get our voices heard, and heard it was. So much so that a group of parents are heading to Washington, DC to speak to Congressmen, Senators, the CDC and so much more.
I was in awe at all that was happening. The speed it was happening, and excited to see the outcome!
Then that fall into place thing I started with....
Another mom reached out to me and found ME plane tickets to get down to DC to be a part of this group. Knowing I work to be a voice so long. We've been friends dealing with this since the beginning. So it started with the plane. Then the group were able to get a house together so no one needs to finance accomodations for the time down there. Kids were cared for at home.
Super excited!!
Next day the group got notice we will be able to meet with the CDC, then my own represenative responded with times he could meet with me. Followed by planning to meet with my state Senator, who happens to the Senate Minority Leader. (That one is still in the works, but it's in the works!)
Then last night as we were all on video chat, the e-mail came in with times to meet with NIH. With times for potential meetings at the White House!
I'm telling you, things are falling into place and it was just meant to be our year.
So folks... I fly out this coming Wednesday, November 14th. Know what makes that day even more special and why I feel this is meant to be... November 14th will be EXACTLY 4 years since JD was officially diagnosed as AFM!!
taking our mind of things
Saturday, November 10, 2018
Thursday, November 1, 2018
Kyphosis
When you hear how this is all a once and done. I think it's done to kind of put you at ease. You are allowed to breath again "knowing" that you have survived it all. Everything is going to just get better, and you don't have to worry again. Right?
That's what they want you to believe!
But they also throw the curveball of, "This is the first we've seen this, so we don't know."
And that's the rub of it all. No one knows what the future holds for any of these children!!
And 4 years out we are still battling that. Our latest development in all of this ...
Kyphosis
At all our appointments, the doctors have been watching JD's spine. When he was sick and so thin his spine protruded so much. I accepted it was from him being so sick. Now that we are thankfully putting on weight, the curve in the spine is still noticeable. Noticeable enough that two of his doctors commented, and one put in a referral to a spine specialist.
We got to enjoy the wonderful world of Shriner's. They do make the waiting areas much more child friendly, and JD was enjoying it after our couple hour drive.
They took him back and put him in shorts and a t-shirt. Which was much more comfortable than those gowns! And had him go for a special x-ray in their new EOS x-ray machine. Followed by evaluation and screening and so much more.
Final diagnosis is that he does most certainly have Kyphosis. However, we are going to watch and see. Since this doctor does not have all of his previous scans and information, she doesn't know how quickly it is developing. He hasn't hit puberty yet and will continue to grow. She's worried about treating to early. So, we go back in 4 months.
This is the real life of this! There is no one and done. Like your typical cold.
It's life altering....
It's life changing...
It's ongoing....
And it has no answers to where the story actually leads!
Only answer I have is we will continue to fight and battle and this Superhero will win!!
That's what they want you to believe!
But they also throw the curveball of, "This is the first we've seen this, so we don't know."
And that's the rub of it all. No one knows what the future holds for any of these children!!
And 4 years out we are still battling that. Our latest development in all of this ...
Kyphosis
At all our appointments, the doctors have been watching JD's spine. When he was sick and so thin his spine protruded so much. I accepted it was from him being so sick. Now that we are thankfully putting on weight, the curve in the spine is still noticeable. Noticeable enough that two of his doctors commented, and one put in a referral to a spine specialist.
We got to enjoy the wonderful world of Shriner's. They do make the waiting areas much more child friendly, and JD was enjoying it after our couple hour drive.
They took him back and put him in shorts and a t-shirt. Which was much more comfortable than those gowns! And had him go for a special x-ray in their new EOS x-ray machine. Followed by evaluation and screening and so much more.
Final diagnosis is that he does most certainly have Kyphosis. However, we are going to watch and see. Since this doctor does not have all of his previous scans and information, she doesn't know how quickly it is developing. He hasn't hit puberty yet and will continue to grow. She's worried about treating to early. So, we go back in 4 months.
This is the real life of this! There is no one and done. Like your typical cold.
It's life altering....
It's life changing...
It's ongoing....
And it has no answers to where the story actually leads!
Only answer I have is we will continue to fight and battle and this Superhero will win!!
Wednesday, October 24, 2018
Finally being heard
It's hard to believe that it took 4 years. But finally someone listened. Someone actually came and listened to our story, and if we touched one family...we touched the world! If one more person stands up and says they want more research..they want to know more and help our cause... that is the snowball we have been looking for.
I can't thank Torie Wells enough for reaching out to me to listen to our story. We are only one family, but we are one family more than there need to be until more is done.
https://cbs6albany.com/news/local/capital-region-family-hopes-national-attention-helps-cure-rare-condition-afm-polio
Monday, October 22, 2018
Recrudescence
RECRUDESCENCE
Such a odd looking word. One I didn't know before. I've heard it one other time in my life... 2 years ago!
What's it mean...
Thank you internet for giving me the definition so I don't have to type .....
" In medicine, it is usually defined as the recurrence of symptoms after a period of remission or quiescence,[1][2][3] in which sense it can sometimes be synonymous with relapse. In a narrower sense it can also be such a recurrence with higher severity than before the remission."
Yes folks. That's right. A disease that they are proudly tell people only happens once. My son has had one other time in 2016, and is now being monitored again.
When he got sick again in 2016 they swore it was a fluke. Now here we are, another 2 years out and we are on hyper monitor mode. And honestly, not by me. As panicky and worried as I get, it wasn't me that put that fear in it all this time.
I've been monitoring him all weekend. The fever remained, he showed weakness, and today he said things "felt off." So a call in was in order. Called at 9 and was told that the first appointment was 4:15pm. I accepted that, but in my head knew if he showed progressive symptoms I wouldn't wait. But he laid on the couch with me the rest of the day.
B asked how long I thought the appointment would go, I said it would be quick as I left the house at 3:30. I didn't get home till 7! Not as quick as I expected. But the doctor decided we needed to do a longer monitor session in the office, as we were fighting the ever ending question....
to hospital or not to hospital
Why is that our question?
Thankfully, we were released home with strict orders that any continuation of symptoms past tomorrow or even the slightest worsening means we are off to the ER and here we go again.
What I know as of now...
He has an: acute upper respiratory infection (oh...that again..)
Sinus infection (oh, that again too.. cool.....)
Ear infection
ok...we can stop repeating now... get the point
The above word was mentioned..and only a couple kids had that word used once.. it would be my super hero to hear it x3!
So what are we doing now. Well, mommy is going to be sleeping by his bed all night. He has nebulizer to help clear things and an antibiotic to hopefully kill whatever else is there. (Other than a virus, obviously!) And keep on the Tylenol and Motrin.
I just wish he felt better..
and let me just say... I hate learning new medical terms! At one point I said I would go into the medical field, decided against that. But it seems, the medical field has come to me!
Now, off to take his temp again, give him his next dose of meds and listen to him whimper and cry and in his sleep.....
Such a odd looking word. One I didn't know before. I've heard it one other time in my life... 2 years ago!
What's it mean...
Thank you internet for giving me the definition so I don't have to type .....
" In medicine, it is usually defined as the recurrence of symptoms after a period of remission or quiescence,[1][2][3] in which sense it can sometimes be synonymous with relapse. In a narrower sense it can also be such a recurrence with higher severity than before the remission."
Yes folks. That's right. A disease that they are proudly tell people only happens once. My son has had one other time in 2016, and is now being monitored again.
When he got sick again in 2016 they swore it was a fluke. Now here we are, another 2 years out and we are on hyper monitor mode. And honestly, not by me. As panicky and worried as I get, it wasn't me that put that fear in it all this time.
I've been monitoring him all weekend. The fever remained, he showed weakness, and today he said things "felt off." So a call in was in order. Called at 9 and was told that the first appointment was 4:15pm. I accepted that, but in my head knew if he showed progressive symptoms I wouldn't wait. But he laid on the couch with me the rest of the day.
B asked how long I thought the appointment would go, I said it would be quick as I left the house at 3:30. I didn't get home till 7! Not as quick as I expected. But the doctor decided we needed to do a longer monitor session in the office, as we were fighting the ever ending question....
to hospital or not to hospital
Why is that our question?
Thankfully, we were released home with strict orders that any continuation of symptoms past tomorrow or even the slightest worsening means we are off to the ER and here we go again.
What I know as of now...
He has an: acute upper respiratory infection (oh...that again..)
Sinus infection (oh, that again too.. cool.....)
Ear infection
ok...we can stop repeating now... get the point
The above word was mentioned..and only a couple kids had that word used once.. it would be my super hero to hear it x3!
So what are we doing now. Well, mommy is going to be sleeping by his bed all night. He has nebulizer to help clear things and an antibiotic to hopefully kill whatever else is there. (Other than a virus, obviously!) And keep on the Tylenol and Motrin.
I just wish he felt better..
and let me just say... I hate learning new medical terms! At one point I said I would go into the medical field, decided against that. But it seems, the medical field has come to me!
Now, off to take his temp again, give him his next dose of meds and listen to him whimper and cry and in his sleep.....
Saturday, October 20, 2018
Hate colds
*cough* *gurgle.. gurgle*
That's the sound around here. That is JD trying to clear his throat battling this cold!
After last night, felt it important to update. He's still battling. His cold is still there. Tylenol and Motrin is keeping it hovering around 100. But once it starts to wear off, like it did this morning, it returns to just under 104. Happened again this afternoon when he took his nap. When he's sleeping, I try to let him rest. For when he's resting his body is fighting hard at whatever is attacking him.
As much as I hated that g-tube. It was overwhelmingly helpful when he wasn't feeling well. He could sleep through me feeding or giving him meds. It was my handy helper. So I'd maintain his every 4 hour routine. But now that he has to do everything orally, I'm not so able to do that.
We're learning how to do this the "normal" way.
Funny to say it like that! What was our normal was him not realizing or tasting. He has decided he HATES the taste of the meds. Something new for him. He spent 4 years able to avoid tasting medicine. Now he knows what other children feel when they are sick. He's not too certain he likes that. To me, that is funny.
He actually said, "I feel bad other kids have always had to taste this stuff."
That's my boy! Not worried about all he went through, thinking that other poor kids having to taste that horrible tasting Tylenol.
So for tonight, we'll keep up on the meds. We have multiple appointments next week, so the boy can't miss any other days of school!
That's the sound around here. That is JD trying to clear his throat battling this cold!
After last night, felt it important to update. He's still battling. His cold is still there. Tylenol and Motrin is keeping it hovering around 100. But once it starts to wear off, like it did this morning, it returns to just under 104. Happened again this afternoon when he took his nap. When he's sleeping, I try to let him rest. For when he's resting his body is fighting hard at whatever is attacking him.
As much as I hated that g-tube. It was overwhelmingly helpful when he wasn't feeling well. He could sleep through me feeding or giving him meds. It was my handy helper. So I'd maintain his every 4 hour routine. But now that he has to do everything orally, I'm not so able to do that.
We're learning how to do this the "normal" way.
Funny to say it like that! What was our normal was him not realizing or tasting. He has decided he HATES the taste of the meds. Something new for him. He spent 4 years able to avoid tasting medicine. Now he knows what other children feel when they are sick. He's not too certain he likes that. To me, that is funny.
He actually said, "I feel bad other kids have always had to taste this stuff."
That's my boy! Not worried about all he went through, thinking that other poor kids having to taste that horrible tasting Tylenol.
So for tonight, we'll keep up on the meds. We have multiple appointments next week, so the boy can't miss any other days of school!
Friday, October 19, 2018
Getting sick is not your normal getting sick here
Just as I jump into wanting to re-boot this blog. So much I need to update, and keep going forward to spread awareness. Today hit with a thud.
This morning woke as every other morning as of late, however, JD was already up. Started getting everyone ready for school, and saw that he was just kind of sitting at the dining room table with his head down. Not something normal for the boy in the morning. Usually I'm trying to get them to calm a little before they take their turns into the shower. Between checking on K in the shower and getting snacks for all three for school, I popped into the dining room and checked his temperature. He said he felt "off" and weak, but he didn't show a fever. So we both agreed a wait and see approach was what we were going to do.
Go about my day. Had a great morning interview to hopefully spread a little more awareness for AFM. Ran some errands and just enjoyed the beautiful weather of the day. Happily thinking that the babies all got to enjoy another nice day at recess.
Around 1:30pm I saw the school's number come across my phone. Hesitantly I answered. Relief that it was the head of CSE. JD had a great idea at school, that she was embarrassed that no one else had thought of. JD is not allowed to really take part in gym. He's on a modified program, but the coach rarely changes the program up for him. So instead, he ends up sitting and watching everyone from the sidelines. But that's about to change. JD recommended that he just take swim class in place of his gym day. What a great idea!! It gets him physically active at his level, and removes the weight of his body. That boy understands his needs so much more than even I do!
Content with how that conversation went, and realizing maybe my worry over seeing that number come across was for nothing. Continued on....
Until the number came across again at 2:45pm. The kids should be on the bus and about to be home!! It was the head of transportation. JD was sick on the bus and wanted to make sure I'll be available as soon as it got home. I assured her I'd be very ready.
Didn't even get a chance to hang up, and the bus was pulling up. Ran out to get them, and JD was as pale as I'd seen. Cuddled up and helped him to the house, and put him up to bed. Hoping that would be all he'd need to push whatever it is along. Checking on him regularly, he was asleep and in his little JD ball.
A couple hours later he came down for some water. His cheeks look extra rosy and the rest of his face pale. Definite time to check that temperature again.
100...
101...
102...
103...
103.4...
103.7....
103.9
My heart is pounding. Pop the thermometer back in to re-check as I go find his Tylenol. I see he's not keeping it fully in his mouth, but still reading over 103. A quick question as to why gives me the answer that I assumed but didn't want to hear, his swallow is a bit hard.
So sitting on pins and needles. Waiting for a new read and if it's still high, where we are going from here....
I've said it before, and I'll say it again.... I wish him being sick could be like everyone else when they get sick, not a whirlwind of whys and what nows.
This morning woke as every other morning as of late, however, JD was already up. Started getting everyone ready for school, and saw that he was just kind of sitting at the dining room table with his head down. Not something normal for the boy in the morning. Usually I'm trying to get them to calm a little before they take their turns into the shower. Between checking on K in the shower and getting snacks for all three for school, I popped into the dining room and checked his temperature. He said he felt "off" and weak, but he didn't show a fever. So we both agreed a wait and see approach was what we were going to do.
Go about my day. Had a great morning interview to hopefully spread a little more awareness for AFM. Ran some errands and just enjoyed the beautiful weather of the day. Happily thinking that the babies all got to enjoy another nice day at recess.
Around 1:30pm I saw the school's number come across my phone. Hesitantly I answered. Relief that it was the head of CSE. JD had a great idea at school, that she was embarrassed that no one else had thought of. JD is not allowed to really take part in gym. He's on a modified program, but the coach rarely changes the program up for him. So instead, he ends up sitting and watching everyone from the sidelines. But that's about to change. JD recommended that he just take swim class in place of his gym day. What a great idea!! It gets him physically active at his level, and removes the weight of his body. That boy understands his needs so much more than even I do!
Content with how that conversation went, and realizing maybe my worry over seeing that number come across was for nothing. Continued on....
Until the number came across again at 2:45pm. The kids should be on the bus and about to be home!! It was the head of transportation. JD was sick on the bus and wanted to make sure I'll be available as soon as it got home. I assured her I'd be very ready.
Didn't even get a chance to hang up, and the bus was pulling up. Ran out to get them, and JD was as pale as I'd seen. Cuddled up and helped him to the house, and put him up to bed. Hoping that would be all he'd need to push whatever it is along. Checking on him regularly, he was asleep and in his little JD ball.
A couple hours later he came down for some water. His cheeks look extra rosy and the rest of his face pale. Definite time to check that temperature again.
100...
101...
102...
103...
103.4...
103.7....
103.9
My heart is pounding. Pop the thermometer back in to re-check as I go find his Tylenol. I see he's not keeping it fully in his mouth, but still reading over 103. A quick question as to why gives me the answer that I assumed but didn't want to hear, his swallow is a bit hard.
So sitting on pins and needles. Waiting for a new read and if it's still high, where we are going from here....
I've said it before, and I'll say it again.... I wish him being sick could be like everyone else when they get sick, not a whirlwind of whys and what nows.
Thursday, October 18, 2018
long overdue update
I really need to work on updating this more. Life got away from me for a bit. Therapies, school schedules, sports schedules and everything else you can think of that happens when you are a family with 3 children.
So much to update. So much more to continue working on. JD is still battling and showing he is my superhero! We are still doing regular physical, occupational and speech therapy. I'm happy with some of his progress, and hope we continue to see it.
I can not believe that JD is in 4th grade already! Hard to believe that he has been being a superhero for 4 years! Here he is with his brother and sister ready for another great school year!
First, I'm happy to report that we finally were able to remove his G-tube in February. Talk about the birthday present for life! He was so excited to finally remove it. Though, we did experience some complications stemming from having it for so long. His surgeon and I were hoping for it to heal on its own, as some will do. However, after having it for 3 1/2 years and the school not following care instructions, it didn't. In May JD had to undergo a small surgery to close opening that his tube once filled. The site healed perfectly following surgery, and all the boy has left is a slight scar to share.
His physical therapist reported that he is in the 1% for physical and core strength for boys his age. This was a bit heartbreaking to hear, and then I went home and watched as he played and chased his siblings in the yard. I no longer let that get to me, just see it as something we need to work a little harder on! Leading to his work in Occupational therapy. His hand strength still is not what we would like, so he is starting to learn computer keyboarding to allow him to take his own notes in class. Excited to see where that will take him! Maybe soon he can help update this blog more regularly for us all.
My final update for now, JD did have a follow up swallow evaluation at the beginning of October. Happy to report it showed a tremendous increase in his swallow, BUT it's showing his physical chewing is now where we need to work on. Honestly, when we started this so long ago, he couldn't swallow so we focused on that. We never looked to see how he was "physically chewing" because we were working on just getting liquids and pureed foods. It has been something I wondered, as JD has had zero recovery to the right side of his face. So, now that is a new focus for us.
Oh, so much more to add...so much more to update. So many changes, so many challenges, and so many developments. But for tonight...spread awareness. And if you ever find yourself in our shoes, know you are not alone!
#AFMAwarenss
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