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
Tuesday, July 7, 2015
Sleep Study results
The results are in... and they are not what we expected!
When a doctor calls you at 6pm on a weeknight, you know you're going to hear things that are likely to turn your work upside down again!!
"Ms. W this is Dr. G. I have JD's sleep study results."
"Oh hello Dr. G. Yes."
"Does JD have a history of seizures?"
- heart sinking, gut punching, loss for words.
So as we discuss further I find out his full results.
During JD's study he had "seizure like activity" but was not observed having an actual seizure. So this led to more questions than answers!
So fast forward to our appointment this week.
We first did his hearing test. If you ask him, he can hear normal sometimes. Then there are times where everything is so loud that a pin dropping will make him scream and cry; while at other times it's as if things can't get loud enough to hear anything! The results of the test showed he has normal hearing. So it was determined it was neuromuscular in aspects and that there is nothing we can really do to help. They feel it is caused by a neurological firing that cause the sound change.
Following that, we did our follow up with his ENT.
JD has moderate sleep apnea. When this is was first presented to me during our phone call, he mentioned that in children they typically jump into surgery to remove the tonsils and adenoids, as they typically limit space and cause the problem. However, he said he wanted to do a physical evaluation on JD again.
So after this careful evaluation, it was determined that both of those things are normal in size and not causing any hinderance. So surgery would be pointless and only cause him pain that he doesn't need. The issue isn't physical in nature, but again neuromuscular. It is the nerves causing the breathing issues while he sleeps. So it appears that he will be heading towards getting a CPAP. Which isn't his favorite choice, as kids don't typically sleep still and this will limit his movement.
But we are holding off for a couple months. JD is scheduled for a follow-up MRI in October, and he wants to see those results before he determines exactly what kind of machine we are looking at. Depending on if the MRI is showing new pathways forming, further damage or stagnation of progress, we will choose the best plan of action for him. My hope is we see new pathways forming, and that just maybe... JUST MAYBE this is temporary and we can see no need for it in the future.
In the mean time, his ENT planned on e-mailing the head of anesthesiology at the hospital to inform them of his findings. To ensure that they know exactly what they need to do and how to handle the situation when JD goes for his MRI. Since he now has this new issue, it may be necessary to ensure he is sedated with oxygen to prevent a repeat of his last MRI where he stopped breathing and was intubated.
Which leads to our question about JD's vocal chords and how they are doing. We originally discussed doing a scope on JD to see how they were functioning, as he fears that there may be some paralysis in that region. This he was wondering from JD's aspiration issues, as well as the location of lesions on the MRI. However, at the appointment we decided to hold off. JD has had a lot of poking and prodding, and at the moment he has not had aspiration pneumonia for some time. So we will revisit the scope at our appointment in October.
Then we got to the elephant in the room. The aspect hanging over my head. As I mentioned, JD was having "seizure activity" on his EEG in his sleep, though he never had an actual seizure at that time. He said typically this activity is only seen in individuals that do experience seizures. I asked if this activity was associated with his episodes of apnea, and he said the two were not correlated and occurred at different intervals and times. So my hope that the brain was firing to get him to breath was not to be.
This information was sent to JD's amazing neurologist, who I was already e-mailing regarding all of this. We have determined that we are going to do an EEG on JD while he is awake and it is his neurologists recommendation to avoid surgery as well. That was his recommendation PRIOR to the ENT's physical exam, but I still wanted to go through the steps to be sure it was the right one. The reason I felt this was our path was that JD did not snore or have apnea prior to being ill.
So again... this disease has lead to more questions, few answers and just another hurdle in the long road we have ahead.
But it's a road that we are all walking together, as a family. We will overcome this. And one day...one day we will say this was a memory that made one of the greatest men I know.
When a doctor calls you at 6pm on a weeknight, you know you're going to hear things that are likely to turn your work upside down again!!
"Ms. W this is Dr. G. I have JD's sleep study results."
"Oh hello Dr. G. Yes."
"Does JD have a history of seizures?"
- heart sinking, gut punching, loss for words.
So as we discuss further I find out his full results.
During JD's study he had "seizure like activity" but was not observed having an actual seizure. So this led to more questions than answers!
So fast forward to our appointment this week.
We first did his hearing test. If you ask him, he can hear normal sometimes. Then there are times where everything is so loud that a pin dropping will make him scream and cry; while at other times it's as if things can't get loud enough to hear anything! The results of the test showed he has normal hearing. So it was determined it was neuromuscular in aspects and that there is nothing we can really do to help. They feel it is caused by a neurological firing that cause the sound change.
Following that, we did our follow up with his ENT.
JD has moderate sleep apnea. When this is was first presented to me during our phone call, he mentioned that in children they typically jump into surgery to remove the tonsils and adenoids, as they typically limit space and cause the problem. However, he said he wanted to do a physical evaluation on JD again.
So after this careful evaluation, it was determined that both of those things are normal in size and not causing any hinderance. So surgery would be pointless and only cause him pain that he doesn't need. The issue isn't physical in nature, but again neuromuscular. It is the nerves causing the breathing issues while he sleeps. So it appears that he will be heading towards getting a CPAP. Which isn't his favorite choice, as kids don't typically sleep still and this will limit his movement.
But we are holding off for a couple months. JD is scheduled for a follow-up MRI in October, and he wants to see those results before he determines exactly what kind of machine we are looking at. Depending on if the MRI is showing new pathways forming, further damage or stagnation of progress, we will choose the best plan of action for him. My hope is we see new pathways forming, and that just maybe... JUST MAYBE this is temporary and we can see no need for it in the future.
In the mean time, his ENT planned on e-mailing the head of anesthesiology at the hospital to inform them of his findings. To ensure that they know exactly what they need to do and how to handle the situation when JD goes for his MRI. Since he now has this new issue, it may be necessary to ensure he is sedated with oxygen to prevent a repeat of his last MRI where he stopped breathing and was intubated.
Which leads to our question about JD's vocal chords and how they are doing. We originally discussed doing a scope on JD to see how they were functioning, as he fears that there may be some paralysis in that region. This he was wondering from JD's aspiration issues, as well as the location of lesions on the MRI. However, at the appointment we decided to hold off. JD has had a lot of poking and prodding, and at the moment he has not had aspiration pneumonia for some time. So we will revisit the scope at our appointment in October.
Then we got to the elephant in the room. The aspect hanging over my head. As I mentioned, JD was having "seizure activity" on his EEG in his sleep, though he never had an actual seizure at that time. He said typically this activity is only seen in individuals that do experience seizures. I asked if this activity was associated with his episodes of apnea, and he said the two were not correlated and occurred at different intervals and times. So my hope that the brain was firing to get him to breath was not to be.
This information was sent to JD's amazing neurologist, who I was already e-mailing regarding all of this. We have determined that we are going to do an EEG on JD while he is awake and it is his neurologists recommendation to avoid surgery as well. That was his recommendation PRIOR to the ENT's physical exam, but I still wanted to go through the steps to be sure it was the right one. The reason I felt this was our path was that JD did not snore or have apnea prior to being ill.
So again... this disease has lead to more questions, few answers and just another hurdle in the long road we have ahead.
But it's a road that we are all walking together, as a family. We will overcome this. And one day...one day we will say this was a memory that made one of the greatest men I know.
Monday, June 1, 2015
Sleep Study
John-Douglas has been working hard, and we are seeing some improvement. Since his continuous aspiration issues, we have finally moved up to a pretty normal menu for him. He is able to have softer foods and regular liquids again. So far we are seeing minimal issues. Only once did we notice a problem where his spaghetti went up his nose, and this pointed us in a new direction of where his feeding issues are. We now think it may have been a soft palette issue all along, pushing food up into his nasal cavity and then allowing it to drip down into his lungs; thus leading to his aspiration pneumonias and not epiglottis issues.
Another phase in JD's continuous work to get better, was to see an ENT (Ear, Nose and Throat) Doctor. The ENT sent him for a sleep study, and we will be doing a hearing evaluation soon as well. We went to the ENT per a recommendation from his neurologist and his speech therapist. He has shown issues with breathing through his nose and smelling. His ears stem from him complaining that he has hearing issues where it is really quiet one second and super loud the next.
Since JD got sick, he has shown different sleep patterns than he had prior. He snores a lot, and at times he is continuously catching his breath. He also seems to sleep lightly. So it was determined it was best to do a sleep study to make sure he is safe in his sleep.
So last Friday, the 29th of May, he had his sleep study. I talked to him about some aspects of it before. He seemed ok, but obviously anxious. The place we went to was very impressive. They worked really well with JD. His Tech B, was great with him and calmed many of his nerves. When we first got there, she gave us a tour of the place. Showed JD to his room and gave him a chance to adjust to what was going on there. She showed him some of the equipment and explained what we would be doing. After that, she gave us a break and down time. JD got into his pajamas and relaxed a bit on his bed for about a half hour.
But now is the fun part... we wait. We won't be getting any results for a month, and I'm seriously wishing to have some that night.
In our pj's and ready for a relaxing night with our
sleep study!
Another phase in JD's continuous work to get better, was to see an ENT (Ear, Nose and Throat) Doctor. The ENT sent him for a sleep study, and we will be doing a hearing evaluation soon as well. We went to the ENT per a recommendation from his neurologist and his speech therapist. He has shown issues with breathing through his nose and smelling. His ears stem from him complaining that he has hearing issues where it is really quiet one second and super loud the next.
Since JD got sick, he has shown different sleep patterns than he had prior. He snores a lot, and at times he is continuously catching his breath. He also seems to sleep lightly. So it was determined it was best to do a sleep study to make sure he is safe in his sleep.
Relaxing on his big bed
So last Friday, the 29th of May, he had his sleep study. I talked to him about some aspects of it before. He seemed ok, but obviously anxious. The place we went to was very impressive. They worked really well with JD. His Tech B, was great with him and calmed many of his nerves. When we first got there, she gave us a tour of the place. Showed JD to his room and gave him a chance to adjust to what was going on there. She showed him some of the equipment and explained what we would be doing. After that, she gave us a break and down time. JD got into his pajamas and relaxed a bit on his bed for about a half hour.
JD, the robot
After some down time, we went and got all the wires attached and got fitted and tucked in for the night. It took some more reading and reassuring to help him relax after that. I was requested to lay with him, which was one I was more than willing to do for him. Once asleep, I went and laid separately, as I didn't want to mess up any results. His tech came in a few times throughout the night to adjust him, check wires when he would do gasping episodes, etc.
How do you sleep like this? All tucked in!
Sunday, April 19, 2015
Zoo trip
A view of the Lions.
Sunday, April 12, 2015
Liberty Mobility
We are on Team Liberty!
JD and Paul
Here is the listing for the album they created for JD.
POWER WHEELCHAIR FOR JD
Today JD received his much needed power wheelchair!!! When we received a note from the Family Affairs office of the RI National Guard regarding JD, we knew we had to do whatever it took to get him a power chair.
We would also like to salute the men and women of the 115th Military Police Company for all they do for us and our freedoms. Not only are they the best of the best in the military but also, the best of the best as people.
We would also like to salute the men and women of the 115th Military Police Company for all they do for us and our freedoms. Not only are they the best of the best in the military but also, the best of the best as people.
Take a moment and look through their photos, as they have more than I got, many of which I'm crying. haha. And a moment to like the company that has helped us so much!
Liberty Mobility FB album for JD
Saturday, April 11, 2015
A chair for JD
I'm a mess of emotions. After fighting the long fight, hearing he's going to keep getting better, and to just keep him home.... JD finally got his own chair. Not any chair, but a power chair. One that is going to help him regain his independence. He no longer has to wait "to get better enough" to go to the zoo, museum and anywhere else he is so used to going. He's been so hesitant to join in and go, as he worries about his own limitations. But no more!!
While waiting for formation, we were introduced to the gentleman, Paul Long, and his crew from Liberty Mobility. JD was given a chance to get to test out his chair, it was finalized and fitted for him. And I cried. Oh did I cry.
Messing with his chair while everyone is talking. :)
Thank you to these amazing people for all they did
to make that smile!
After he was brought before the unit and officially got to take part. Below is the video of the presentation.
Now, JD has the ability to walk. And he's shown us he is strong and wanting to fight for it. But he still is very very weak and tires quickly. When he tires, he requires more than just a bench to relax. I already told him, I'm not letting him use this to get a pass and become lazy. Just the opposite, this is going to help propel him further. Already knowing he has this support, he has asked for trips to the zoo, museum, parks and so much more. This chair is giving my boy his life back...and for that, I am eternally grateful!!
Tuesday, February 10, 2015
Good bye 5's
Tonight is the last night my little man will be 5. Tomorrow is HIS day!
A year ago I had so many hopes and dreams for his day! So many things to look forward to in the year to come! He was going to get to start school in the year to come, make friends, and so much more!
Little did I know. At the time, it was just another birthday. A big one, true, but a birthday just the same. We had a small family thing at the bowling ally. It was exciting, and he loved it, but I happily celebrated just another year.
But the last year showed me so much more in that little man.
I saw courage, as he entered an already established Pre-K program in February and excelled!! I saw compassion as he entered his Kindergarten class and he saw his good friend struggling, and he reached out to help. And I saw courage!! A courage I could only hope to have an ounce of!
Last October there was a point where I honestly cried and thought the worst. I was losing my baby boy! My miracle! My super hero! As I watched his body shutting down and stop responding to his commands. As I sat hopeless as doctor's told me, "We don't know." I didn't know if I'd see my big man blow out his candles on his cake to celebrate turning SIX!!
But you know what, we are here!!
Not only are we here, but he has overcome so many obstacles and showed me so much more.
My little man, MY six year old, has more strength, courage, compassion and persistence than I have ever seen in anyone!
I am certain that he will not look back so fondly on his 5's! Honestly, I could not blame him. I can only hope that when he does, he also remembers all the awesome things he did and accomplished!
* He started a new school with new people! - twice!
* He suffered with a debilitating illness that left him hospitalized and paralyzed.
* He lost the ability to eat
* He retrained his body to walk and hold up his own head.
* He retrained his body to swallow.
He has come so far in just a short period! He may only have been FIVE...but he is a superhero beyond any superhero I have ever read about or watched! And I am proud. Proud to say that that superhero is my baby. No. he is not a baby. He is one tough little man!!
A tough little man who will not let anything keep him down!!
Goodbye 5's. I can't say we'll miss you. Parts we'll look back on fondly, but you were not our favorite year!
Hello 6's!! I can't wait to see what more you bring for my baby! How much further is he going to grow! I don't know if I can get much prouder, but I'm sure I can!
A year ago I had so many hopes and dreams for his day! So many things to look forward to in the year to come! He was going to get to start school in the year to come, make friends, and so much more!
Little did I know. At the time, it was just another birthday. A big one, true, but a birthday just the same. We had a small family thing at the bowling ally. It was exciting, and he loved it, but I happily celebrated just another year.
But the last year showed me so much more in that little man.
I saw courage, as he entered an already established Pre-K program in February and excelled!! I saw compassion as he entered his Kindergarten class and he saw his good friend struggling, and he reached out to help. And I saw courage!! A courage I could only hope to have an ounce of!
Last October there was a point where I honestly cried and thought the worst. I was losing my baby boy! My miracle! My super hero! As I watched his body shutting down and stop responding to his commands. As I sat hopeless as doctor's told me, "We don't know." I didn't know if I'd see my big man blow out his candles on his cake to celebrate turning SIX!!
But you know what, we are here!!
Not only are we here, but he has overcome so many obstacles and showed me so much more.
My little man, MY six year old, has more strength, courage, compassion and persistence than I have ever seen in anyone!
I am certain that he will not look back so fondly on his 5's! Honestly, I could not blame him. I can only hope that when he does, he also remembers all the awesome things he did and accomplished!
* He started a new school with new people! - twice!
* He suffered with a debilitating illness that left him hospitalized and paralyzed.
* He lost the ability to eat
* He retrained his body to walk and hold up his own head.
* He retrained his body to swallow.
He has come so far in just a short period! He may only have been FIVE...but he is a superhero beyond any superhero I have ever read about or watched! And I am proud. Proud to say that that superhero is my baby. No. he is not a baby. He is one tough little man!!
A tough little man who will not let anything keep him down!!
Goodbye 5's. I can't say we'll miss you. Parts we'll look back on fondly, but you were not our favorite year!
Hello 6's!! I can't wait to see what more you bring for my baby! How much further is he going to grow! I don't know if I can get much prouder, but I'm sure I can!
Sunday, February 8, 2015
Looking back
It's funny what stands out when you look back at things. Things that happened prior to this. Before our new normal. Before a mystery illness took my son's life and turned it on his head.
He was an adventurous and smart little boy. Though he had many social-emotional issues, he was a pretty happy boy. He loved to laugh and smile. He loved to just be happy. He found his own happy!
But not only that. He was compassionate. Which is hard for a person suffering from social-emotional problems. He loved helping. But he could tell when someone was struggling like him. Maybe not in the same way, but still struggling.
The first day of school he showed that! I took him to school scared at how it would go. He doesn't do change well. He likes his routine, so how would the switch from our routine to the new routine go. I also worried about him being gone all day. How would he do with the expectations, the social situations and so forth. We walked into his class and he stood in the back with me. I watched him out of the corner of my eye. He took it all in. He watched. He learned what the expectations were going to be. How to "fit" in.
You see, one of John-Douglas's things is that he monitors things and then fits into the mold, so he doesn't stand out. At this time, he could see what the kids were doing and adjusted into the role of being a kid. When we were in the hospital, he saw mainly adults and doctors, so he quickly became a mini-doctor/adult and used words that no 5 year old should know or use. But that was what his environment was teaching him.
But back to that day in September 2014. (Yes, a short month before!) Watching JD, he saw what other kids were doing. But he also noticed the little boy hugging his mother's leg. He looked at me and looked back. He knew the little boy from his Pre-K class the year before. He was puzzled for a minute.
"Mommy, Anthony is upset? I think he's scared?"
"You are probably right baby. This is scary for many kids. It's different."
He let that set in!
"Mommy, I'm going to go talk to him!"
I didn't stop him. I watched! My little boy that has his own internal turmoils on these situations saw an instant that someone was having a harder time then he was.
But what happened next, I see over and over. That little boy, let go of his mother's leg.
Her eyes met mine.
Relief!
She had been just as scared as I had been about sending her little boy to school! She was just as timid and unsure of how her son would do in this new setting, new classroom, and new exception. Both boys came from a class of 6, to a class of 20. A whole new world.
I smiled realizing what mylittle big boy had done! He had taken away his own issues and put another's needs first!
In the end, that little boy let his mom and dad leave. While parents started filing out of the classroom, I heard in that oh so familiar voice. "Why don't you sit next to me Anthony?" And I ducked out of the classroom before he could see the tears. Not tears because I was scared for him. Not tears because he was struggling. No. These were tears of pride! Tears at how much my baby had grown!
I think the best part of this came on the day that JD got to visit with his class for about 20 minutes prior to returning to school. This same boy scooted right up next to JD to talk books. It was like they never had been separated. And that same look of relief that JD's presence had installed in that boy so long ago, was there again. But this time, JD took this opportunity to not focus on his own faults, but to be the same little boy he had been before! His friend he had helped before, was returning the favor to help him!
Another time that comes to mind and seems to replay often. Almost as if someone was trying to tell me something was going to happen, before we knew it. A little over a week before JD got sick, we were heading to one of the local stores. I noticed a woman and her service dog from a distance. She was standing near the doors to go in. I crossed the parking lot thinking of how best to explain to the kids about this. I spent a lot of time up to this point, explaining that we don't rush dogs, we ask permission to pet and talk, and so forth. But something told me to talk to them a bit more.
So once we crossed over to the sidewalk, to the side of the building. I stopped the 3 of them from going further. I asked if they noticed anything, and JD mentioned the dog wearing a vest. So I got down to their level and explained this dog's importance. I told them that some people have limitations that require them to use the help of others or animals, and that this dog was a service dog. You could tell by the vest. That was to alert people that it was working, and not to approach it. As I don't let them approach other dogs, these dogs are even more important to not disturb. I made it an important conversation, but didn't over do it for the age of the kids. I finished by saying that this was the time where it was important to not ask the owner to pet, but to slowly walk around and get to the door and continue on our day.
So as we headed for the door, the woman stopped us.
"Thank you!"
I was taken aback. She explained that she was very impressed with how I approached the subject, and that she was thankful. Many people don't take the time to explain such things to kids, especially at my little ones ages. She was also impressed at how well they had listened, and how they had done just what I had explained. To give room, and go on, without making eye contact with the dog and make it lose it's focus. It turned out that the dog was actually in training still. So she asked the kids, as long as I was ok, to come on over and see the dog. She explained that something had happened to here to make it harder to use her legs and to constantly get up and get things. So the dog was being trained for support and for getting items she might need of shelves. The kids learned a lot that day, and I saw JD take it all in.
Now as we are looking and reaching out to figure out what is best in terms of a Service Dog for JD, that interaction stands out. It was a very important event in our timeline, that at the time seemed so trivial. I thought I was teaching my kids an important lesson on how to accept differences in others, but now they are that step closer to understanding the use of a dog that is now needed.
Simple events that have made such a huge impact, without seeming so big at its time. I know there are many, and when the time is ready, they too will present themselves. Life's lessons are ever ongoing!
He was an adventurous and smart little boy. Though he had many social-emotional issues, he was a pretty happy boy. He loved to laugh and smile. He loved to just be happy. He found his own happy!
But not only that. He was compassionate. Which is hard for a person suffering from social-emotional problems. He loved helping. But he could tell when someone was struggling like him. Maybe not in the same way, but still struggling.
The first day of school he showed that! I took him to school scared at how it would go. He doesn't do change well. He likes his routine, so how would the switch from our routine to the new routine go. I also worried about him being gone all day. How would he do with the expectations, the social situations and so forth. We walked into his class and he stood in the back with me. I watched him out of the corner of my eye. He took it all in. He watched. He learned what the expectations were going to be. How to "fit" in.
You see, one of John-Douglas's things is that he monitors things and then fits into the mold, so he doesn't stand out. At this time, he could see what the kids were doing and adjusted into the role of being a kid. When we were in the hospital, he saw mainly adults and doctors, so he quickly became a mini-doctor/adult and used words that no 5 year old should know or use. But that was what his environment was teaching him.
But back to that day in September 2014. (Yes, a short month before!) Watching JD, he saw what other kids were doing. But he also noticed the little boy hugging his mother's leg. He looked at me and looked back. He knew the little boy from his Pre-K class the year before. He was puzzled for a minute.
"Mommy, Anthony is upset? I think he's scared?"
"You are probably right baby. This is scary for many kids. It's different."
He let that set in!
"Mommy, I'm going to go talk to him!"
I didn't stop him. I watched! My little boy that has his own internal turmoils on these situations saw an instant that someone was having a harder time then he was.
But what happened next, I see over and over. That little boy, let go of his mother's leg.
Her eyes met mine.
Relief!
She had been just as scared as I had been about sending her little boy to school! She was just as timid and unsure of how her son would do in this new setting, new classroom, and new exception. Both boys came from a class of 6, to a class of 20. A whole new world.
I smiled realizing what my
In the end, that little boy let his mom and dad leave. While parents started filing out of the classroom, I heard in that oh so familiar voice. "Why don't you sit next to me Anthony?" And I ducked out of the classroom before he could see the tears. Not tears because I was scared for him. Not tears because he was struggling. No. These were tears of pride! Tears at how much my baby had grown!
I think the best part of this came on the day that JD got to visit with his class for about 20 minutes prior to returning to school. This same boy scooted right up next to JD to talk books. It was like they never had been separated. And that same look of relief that JD's presence had installed in that boy so long ago, was there again. But this time, JD took this opportunity to not focus on his own faults, but to be the same little boy he had been before! His friend he had helped before, was returning the favor to help him!
Another time that comes to mind and seems to replay often. Almost as if someone was trying to tell me something was going to happen, before we knew it. A little over a week before JD got sick, we were heading to one of the local stores. I noticed a woman and her service dog from a distance. She was standing near the doors to go in. I crossed the parking lot thinking of how best to explain to the kids about this. I spent a lot of time up to this point, explaining that we don't rush dogs, we ask permission to pet and talk, and so forth. But something told me to talk to them a bit more.
So once we crossed over to the sidewalk, to the side of the building. I stopped the 3 of them from going further. I asked if they noticed anything, and JD mentioned the dog wearing a vest. So I got down to their level and explained this dog's importance. I told them that some people have limitations that require them to use the help of others or animals, and that this dog was a service dog. You could tell by the vest. That was to alert people that it was working, and not to approach it. As I don't let them approach other dogs, these dogs are even more important to not disturb. I made it an important conversation, but didn't over do it for the age of the kids. I finished by saying that this was the time where it was important to not ask the owner to pet, but to slowly walk around and get to the door and continue on our day.
So as we headed for the door, the woman stopped us.
"Thank you!"
I was taken aback. She explained that she was very impressed with how I approached the subject, and that she was thankful. Many people don't take the time to explain such things to kids, especially at my little ones ages. She was also impressed at how well they had listened, and how they had done just what I had explained. To give room, and go on, without making eye contact with the dog and make it lose it's focus. It turned out that the dog was actually in training still. So she asked the kids, as long as I was ok, to come on over and see the dog. She explained that something had happened to here to make it harder to use her legs and to constantly get up and get things. So the dog was being trained for support and for getting items she might need of shelves. The kids learned a lot that day, and I saw JD take it all in.
Now as we are looking and reaching out to figure out what is best in terms of a Service Dog for JD, that interaction stands out. It was a very important event in our timeline, that at the time seemed so trivial. I thought I was teaching my kids an important lesson on how to accept differences in others, but now they are that step closer to understanding the use of a dog that is now needed.
Simple events that have made such a huge impact, without seeming so big at its time. I know there are many, and when the time is ready, they too will present themselves. Life's lessons are ever ongoing!
Thursday, February 5, 2015
*minor rant*
Can I just say I really hate this, whatever it is!!
JD used to love being an active kid outdoors. We used to hike all the time, go to zoos and so much more. A few weeks before JD got sick, we went on a 6 mile hike up a 3700 foot mountain. He loved every second of it. Pulling himself up rocks, checking out salamanders, birds and other animals. Now he's becoming a hermit! Because it hurts after a limited time of doing anything that requires him to hold his head up, he doesn't want to really go out and do much. He rarely wants to leave his bedroom. He's becoming addicted to video games, and I hate it! I try to pull him out, but finding the "pushing him" and "pushing him too far", is a hard line.
Add to it, he hates the light!! He used to love playing in the sun. Sunny winter days were his favorite. You know the kind, where the ground is covered in so much white it makes the light even brighter! He could spend hours playing out in the snow. I'd be a frozen popsicle. Summers at the beach were his next favorite. Now if the sun is out he cries that it's hurting his eyes! He refuses to open the curtains in his room. He wants to go out and do things only if it's dark. The museum is cool to him, because it's dim and the light isn't bright. But the zoo is getting to be too much.
Not to mention that the poor boy has such a limited diet. Anything that can get pureed is ok, and any drink thickened. But you know what. Not all food is ok to puree, so we have learned! He just wants a cheeseburger, with pickles, tomatoes, lettuce, mustard and ketchup! So he keeps telling me how to make it. And pizza. A real pizza! Things a normal kid should want! But no! His birthday party is this weekend. His awesome snacks for it... PUDDING. Thinking of some for everyone else to also enjoy, but that's why I planned it at non-meal time. He can't even have a real cake, can't have ice cream! He gets pudding and frosting. I do plan on mashing up some of his cake in pudding, but still. You get my point!
It's not fair! Why should my kid have to change what he loves for this. I know JD doesn't have it the worst and I shouldn't complain, but I am upset today. Ok. Rant over. I just need to get that out! Now to go find him a cool pair of shades and hope that helps a little bit! Followed by looking up a few new ideas of cool foods to puree!
JD used to love being an active kid outdoors. We used to hike all the time, go to zoos and so much more. A few weeks before JD got sick, we went on a 6 mile hike up a 3700 foot mountain. He loved every second of it. Pulling himself up rocks, checking out salamanders, birds and other animals. Now he's becoming a hermit! Because it hurts after a limited time of doing anything that requires him to hold his head up, he doesn't want to really go out and do much. He rarely wants to leave his bedroom. He's becoming addicted to video games, and I hate it! I try to pull him out, but finding the "pushing him" and "pushing him too far", is a hard line.
Add to it, he hates the light!! He used to love playing in the sun. Sunny winter days were his favorite. You know the kind, where the ground is covered in so much white it makes the light even brighter! He could spend hours playing out in the snow. I'd be a frozen popsicle. Summers at the beach were his next favorite. Now if the sun is out he cries that it's hurting his eyes! He refuses to open the curtains in his room. He wants to go out and do things only if it's dark. The museum is cool to him, because it's dim and the light isn't bright. But the zoo is getting to be too much.
Not to mention that the poor boy has such a limited diet. Anything that can get pureed is ok, and any drink thickened. But you know what. Not all food is ok to puree, so we have learned! He just wants a cheeseburger, with pickles, tomatoes, lettuce, mustard and ketchup! So he keeps telling me how to make it. And pizza. A real pizza! Things a normal kid should want! But no! His birthday party is this weekend. His awesome snacks for it... PUDDING. Thinking of some for everyone else to also enjoy, but that's why I planned it at non-meal time. He can't even have a real cake, can't have ice cream! He gets pudding and frosting. I do plan on mashing up some of his cake in pudding, but still. You get my point!
It's not fair! Why should my kid have to change what he loves for this. I know JD doesn't have it the worst and I shouldn't complain, but I am upset today. Ok. Rant over. I just need to get that out! Now to go find him a cool pair of shades and hope that helps a little bit! Followed by looking up a few new ideas of cool foods to puree!
Wednesday, February 4, 2015
uneventful update
School seems to be going really well. JD is excited every morning to get going!
After having to miss last Wednesday and Thursday due to his rash, and then Monday this week due to the weather; JD was jumping all in to get back to school for Tuesday and this morning!
The rash battled it's way through, and by the end of the weekend he was back to good. Don't get me wrong, I was scoured his little body when he came home Tuesday night to see if he had shown any signs of a reaction. Since we don't know what caused it to begin with. It's so frustrating to say that.
But back to school So he's had a total of 4 days at school since returning. He's loving being with his friends. He tells me what he's covered when he's been in class. Yesterday was ground hog and Ground Hog Day information. Today was about healthy living. Now he's going around the house telling me what I should and shouldn't do to stay healthy. I just hope he didn't take anything specific and form his own hypothesis for why he got sick. Such as he told me today that we should get rid of the tv as watching it can make you sick. I told him he was right it was wrong to watch too much, but that didn't make him sick! That we have always been a very active family. Before getting sick, we would spend every weekend, regardless of season, hiking up in the mountains. A month before onset, we actually completed a 6 mile 3744ft submit of one of the mountains. The kidsenjoy LOVE it! We get to see so many animals and spend so much time in nature. So for JD to concern himself with this, I don't want it to become his new focus. He doesn't need to struggle and wonder why he got sick. No one knows. Not even the specialists. So let's not make him deal with it.
His aide tells me that he is doing really well, and she can see him stretching out and trying to do more for himself. They are not seeing many of the behaviors at school, so that is a positive for this mommy. He hasn't had any OT, however. I'm hoping that gets started soon. I'll know more about all of that at our next meeting on Monday.
However, when we get home he is so exhausted that he breaks down. At the store tonight, I mentioned I wasn't going to look at one thing and he just had a melt down. The problem is that when he does that, he stops focusing on his support and collapses. I'm thinking that he is just getting overwhelmed. But he loves it, and I won't be stopping the supporting push from behind.
Not the most eventful update, but that's what is going on in our little world! Better than the steps backward we've been seeing as of late!
After having to miss last Wednesday and Thursday due to his rash, and then Monday this week due to the weather; JD was jumping all in to get back to school for Tuesday and this morning!
The rash battled it's way through, and by the end of the weekend he was back to good. Don't get me wrong, I was scoured his little body when he came home Tuesday night to see if he had shown any signs of a reaction. Since we don't know what caused it to begin with. It's so frustrating to say that.
But back to school So he's had a total of 4 days at school since returning. He's loving being with his friends. He tells me what he's covered when he's been in class. Yesterday was ground hog and Ground Hog Day information. Today was about healthy living. Now he's going around the house telling me what I should and shouldn't do to stay healthy. I just hope he didn't take anything specific and form his own hypothesis for why he got sick. Such as he told me today that we should get rid of the tv as watching it can make you sick. I told him he was right it was wrong to watch too much, but that didn't make him sick! That we have always been a very active family. Before getting sick, we would spend every weekend, regardless of season, hiking up in the mountains. A month before onset, we actually completed a 6 mile 3744ft submit of one of the mountains. The kids
His aide tells me that he is doing really well, and she can see him stretching out and trying to do more for himself. They are not seeing many of the behaviors at school, so that is a positive for this mommy. He hasn't had any OT, however. I'm hoping that gets started soon. I'll know more about all of that at our next meeting on Monday.
However, when we get home he is so exhausted that he breaks down. At the store tonight, I mentioned I wasn't going to look at one thing and he just had a melt down. The problem is that when he does that, he stops focusing on his support and collapses. I'm thinking that he is just getting overwhelmed. But he loves it, and I won't be stopping the supporting push from behind.
Not the most eventful update, but that's what is going on in our little world! Better than the steps backward we've been seeing as of late!
Friday, January 30, 2015
reaching out
I reached out to the neurologist last night over the rash, and woke up to a response e-mail. I truly love this guy. He is amazing and willing to look and find answers. Even if it seems so far fetched!
His first e-mail asked if I possibly had photos. So I sent what I had and as much of an explanation of what I saw and when it happened.
By lunch he had e-mailed me back. He thinks he knows what it is, and that it is a type of auto-immune response. He said he couldn't pin point it without seeing JD in office. He offered to open up a time slot just to get JD in. He mentioned that the best for any of auto-immunes would be to continue the steroids. So we continued on the Prednisone for one more.
He did say he wished that we could see what the progression of the rash would be. So after a brief discussion with JD's father, we thought it best to follow through with the Neurologists idea. He said he did not want to contradict the primary doctor, but he wished he could see what it would do. Well, the primary wasn't looking at anything other than it was environmental. So we felt it best to trust one of JD's specialists. Since JD wasn't screaming and complaining from the rash any longer, and seemed to be a lot less itchy. So we allowed it to do what it would do.
We'll see how the rest of the weekend progresses. But I'm hopeful that his body will have relaxed on it's own. No more rash, and let's hope it goes away for good this time! His poor little body, and just himself, has been through way too much already!!
JD returned to see his ST at rehab, and is so happy to still be seeing her. I asked for some other exercises to work with JD. I need to be able to do something with him at home to help things. It's just super frustrating to me that I can work every other weakened muscle in his body to make them get stronger and more range of motion. I can't work his throat. I have no ability or way to force it to work. I feel hopeless in that regards. But I am so thankful that he has such an amazing therapist involved. And when all his other therapists released him to the school for the rest of his therapies, she felt she needed him to stay. He will continue going for some time. We haven't seen enough, or any, progression in his swallow. So we have appointments through the end of April. I just hope by April we have progressed passed purees.
So busy day with great information and hopeful progress!
His first e-mail asked if I possibly had photos. So I sent what I had and as much of an explanation of what I saw and when it happened.
By lunch he had e-mailed me back. He thinks he knows what it is, and that it is a type of auto-immune response. He said he couldn't pin point it without seeing JD in office. He offered to open up a time slot just to get JD in. He mentioned that the best for any of auto-immunes would be to continue the steroids. So we continued on the Prednisone for one more.
He did say he wished that we could see what the progression of the rash would be. So after a brief discussion with JD's father, we thought it best to follow through with the Neurologists idea. He said he did not want to contradict the primary doctor, but he wished he could see what it would do. Well, the primary wasn't looking at anything other than it was environmental. So we felt it best to trust one of JD's specialists. Since JD wasn't screaming and complaining from the rash any longer, and seemed to be a lot less itchy. So we allowed it to do what it would do.
We'll see how the rest of the weekend progresses. But I'm hopeful that his body will have relaxed on it's own. No more rash, and let's hope it goes away for good this time! His poor little body, and just himself, has been through way too much already!!
JD returned to see his ST at rehab, and is so happy to still be seeing her. I asked for some other exercises to work with JD. I need to be able to do something with him at home to help things. It's just super frustrating to me that I can work every other weakened muscle in his body to make them get stronger and more range of motion. I can't work his throat. I have no ability or way to force it to work. I feel hopeless in that regards. But I am so thankful that he has such an amazing therapist involved. And when all his other therapists released him to the school for the rest of his therapies, she felt she needed him to stay. He will continue going for some time. We haven't seen enough, or any, progression in his swallow. So we have appointments through the end of April. I just hope by April we have progressed passed purees.
So busy day with great information and hopeful progress!
Thursday, January 29, 2015
still...
I will make myself believe it will continue getting better. I'll also make myself believe that every little thing is not going to make things worse.
It's not getting better. Here I thought the medicine would be it. But he woke up just as bad as yesterday. Environmental?
I cleared his room, stripped it. Called the Primary and we took him in again.
Again, it's an environmental rash of an unknown origin.
Well I'm not accepting that any more.
When the medicine wears off, the rash returns! The pain returns! His joints are red and swollen!
Honestly, if it was just the rash, I wouldn't be as freaked out. Ok, I would be as neurotic about it. But the joint pain and the burning feet. That seems a bit more than just an allergic reaction!!
So tonight I e-mailed his neurologist. I have to try something. Maybe there is something more. The worst thing that could happen, the doctor agrees with his primary and we sit it out and hope that whatever is causing it, finally lets his poor little body alone!
Nothing ventured, nothing gained... trudging forward we go!
It's not getting better. Here I thought the medicine would be it. But he woke up just as bad as yesterday. Environmental?
Swollen eyes and very itchy
The rash has white centers
After his morning meds of Benadryl and Prednisone
Again, it's an environmental rash of an unknown origin.
Well I'm not accepting that any more.
When the medicine wears off, the rash returns! The pain returns! His joints are red and swollen!
Honestly, if it was just the rash, I wouldn't be as freaked out. Ok, I would be as neurotic about it. But the joint pain and the burning feet. That seems a bit more than just an allergic reaction!!
So tonight I e-mailed his neurologist. I have to try something. Maybe there is something more. The worst thing that could happen, the doctor agrees with his primary and we sit it out and hope that whatever is causing it, finally lets his poor little body alone!
Nothing ventured, nothing gained... trudging forward we go!
Wednesday, January 28, 2015
Another hurdle
It seems we get so far ahead, and something else gets thrown at us!!
John-Douglas woke up with a severe rash. A head to toe spotted annoyance.
So of course he had to miss school. Only been going for 2 days, and already a sick day. I'm of course having every thought possible. He hasn't been out in school, so who knows what he could have contacted. I don't know if this causes him to be immunosuppressed. I hate the not knowing.
Last night while we were sitting at the table doing some of his school work, he complained his elbows were itchy. I looked and noticed they were red, and thought maybe it's from sitting at school and doing desk work. He hasn't had to spend that amount of time before. After dinner and work done, we went up to take a bath. Which once he finished that, I noticed there was some rashes forming on his knees. Put some anti-itch cream on it and tucked him in. He woke me up in the middle of the night that his back was itchy. Again, put cream and got him a bit settled.
But that is how we woke up! It seems to be worse on points where the bones are closer to the surface, and pressure zones. They are on his elbows, knees, hips, and follow his spine vertebrae for vertebrae! And of course his face!!
I called his pediatrician as soon as I knew someone was in the office. The nurse said I could bring him in at 9:30. Started getting everyone ready. The moment JD put socks on, he screamed a blood curdling scream. "Mommy, it burns! The socks are burning me!!" He tried to stand up, and he collapsed to the floor. A heart breaking and heart stopping moment! Once we got him on the couch, I told him he only had to deal with it until we got home. He complained that his joints hurt and popped.
So once it was time to go, I picked him up and very gently carried my big man to the car. I wasn't going to make him deal with the pain of putting weight on his feet. He hasn't complained or had pain of this magnitude since the hospital. Images of my baby back in a hospital bed flooded through my mind. Once we dropped Ptolemy off, we headed over.
The one good thing about a small office is you can get in pretty quick!
After a quick exam, it was determined he's having an allergic reaction. He said possibly to the Augmenton he had been on for the pneumonia. My question in regards to that is that shouldn't it have happened sooner. And he agreed, it should have happened the first couple days. Not after he had already finished a week of it. He also said it doesn't look like a typical reaction to medicine. He assumes it's environmental, and just recommended Benadryl
So that's it. That's what we're going with. I'm very hesitant to agree with that. Why? Because there has really been no new environmental changes. No new detergents. No new foods. Nothing. Except school? and well, he's home now and it's still going on! Also, WHY would this reaction cause such violent pain!?!
We stopped to get his meds on the way home, and I gave him a few doses of the Benadryl and it helped the annoying itchy feeling. It helped him rest a bit. The reddest aspects left, but he still had lighter red spots. But he has some blisters forming on his lips.
However, once the Benadryl started to wear off, the larger red dots returned. Called the primary again, and we have Prednisone to give him with the Benadryl. So we'll see how this goes!
John-Douglas woke up with a severe rash. A head to toe spotted annoyance.
So of course he had to miss school. Only been going for 2 days, and already a sick day. I'm of course having every thought possible. He hasn't been out in school, so who knows what he could have contacted. I don't know if this causes him to be immunosuppressed. I hate the not knowing.
Last night while we were sitting at the table doing some of his school work, he complained his elbows were itchy. I looked and noticed they were red, and thought maybe it's from sitting at school and doing desk work. He hasn't had to spend that amount of time before. After dinner and work done, we went up to take a bath. Which once he finished that, I noticed there was some rashes forming on his knees. Put some anti-itch cream on it and tucked him in. He woke me up in the middle of the night that his back was itchy. Again, put cream and got him a bit settled.
But that is how we woke up! It seems to be worse on points where the bones are closer to the surface, and pressure zones. They are on his elbows, knees, hips, and follow his spine vertebrae for vertebrae! And of course his face!!
I called his pediatrician as soon as I knew someone was in the office. The nurse said I could bring him in at 9:30. Started getting everyone ready. The moment JD put socks on, he screamed a blood curdling scream. "Mommy, it burns! The socks are burning me!!" He tried to stand up, and he collapsed to the floor. A heart breaking and heart stopping moment! Once we got him on the couch, I told him he only had to deal with it until we got home. He complained that his joints hurt and popped.
So once it was time to go, I picked him up and very gently carried my big man to the car. I wasn't going to make him deal with the pain of putting weight on his feet. He hasn't complained or had pain of this magnitude since the hospital. Images of my baby back in a hospital bed flooded through my mind. Once we dropped Ptolemy off, we headed over.
The one good thing about a small office is you can get in pretty quick!
After a quick exam, it was determined he's having an allergic reaction. He said possibly to the Augmenton he had been on for the pneumonia. My question in regards to that is that shouldn't it have happened sooner. And he agreed, it should have happened the first couple days. Not after he had already finished a week of it. He also said it doesn't look like a typical reaction to medicine. He assumes it's environmental, and just recommended Benadryl
So that's it. That's what we're going with. I'm very hesitant to agree with that. Why? Because there has really been no new environmental changes. No new detergents. No new foods. Nothing. Except school? and well, he's home now and it's still going on! Also, WHY would this reaction cause such violent pain!?!
We stopped to get his meds on the way home, and I gave him a few doses of the Benadryl and it helped the annoying itchy feeling. It helped him rest a bit. The reddest aspects left, but he still had lighter red spots. But he has some blisters forming on his lips.
However, once the Benadryl started to wear off, the larger red dots returned. Called the primary again, and we have Prednisone to give him with the Benadryl. So we'll see how this goes!
Monday, January 26, 2015
"It was amazing"
Three simple words that my son said upon being picked up from his first day back to school. Those three simple words sent my heart soaring!
JD was a bit scared and anxious last night, and then this morning before school. But the smile on his face. Oh that very important smile. It never left when he talked about school. About his day with friends. Meeting his new aid and his speech therapist. It was great to know that he has such a great support group with his friends. It means a lot to him, and to me.
I'll be honest. I wasn't sure how I was going to handle it. I honestly haven't really left him, good or bad. Short of small bursts when he was in therapy at rehab, and I knew he was safe. But this is a whole new level of trust for me. I walked and talked with the nurse. I got home and made myself adjust. I felt lost for a little bit, honestly. Had time with my little girl. But I'm so used to being so busy with JD's schedule and appointments, I wasn't sure what to do.
It looks like JD is going to have Speech therapy on Mondays and Wednesdays. He has a rest room in the library and the nurses office, for when the work and pain gets too much for him. His aid is learning how to notice when he needs some breaks, and also when he sounds like he is backing up a little in his vocal chords.
One thing I'm a bit concerned with, and will need to keep a close eye on, is that they are separating him out. I asked if this is just for now, or for the remainder of time. And it appears like it's going to be a thing I'll have to address. I understand JD's safety is part of their concern, but I don't feel my son should be segregated out during some of the few social times of his day. It's hard enough to get him in enough when he's going to PT, OT and Speech. Not to mention that he is only on half days for right now. I can see them doing it for the first couple days till they know and feel comfortable, but he should be in his class by next week. I hate to make waves, so I need to figure out where everyone feels it is best.
I'm doing math with him at home, since he gets out before that class. The work sent home honestly only took him about 5 minutes to complete. So we spent a little more time doing some of the worksheets he had left from being out. So added another half hour or so to his busy day, and he tolerated it really well.
But all in all, he had a great first day back. He loved it. He's happy. He's a bit tired tonight, but that's to be expected. We'll see how the rest of the week goes. Especially since he's used to being busy on Mondays, Wednesdays and Fridays for therapy, while Tuesday and Thursday were his rest days.
But early to bed for my little man. For my Super Hero has great things to achieve, but always surprising me with his will, determination and strength!
JD was a bit scared and anxious last night, and then this morning before school. But the smile on his face. Oh that very important smile. It never left when he talked about school. About his day with friends. Meeting his new aid and his speech therapist. It was great to know that he has such a great support group with his friends. It means a lot to him, and to me.
I'll be honest. I wasn't sure how I was going to handle it. I honestly haven't really left him, good or bad. Short of small bursts when he was in therapy at rehab, and I knew he was safe. But this is a whole new level of trust for me. I walked and talked with the nurse. I got home and made myself adjust. I felt lost for a little bit, honestly. Had time with my little girl. But I'm so used to being so busy with JD's schedule and appointments, I wasn't sure what to do.
It looks like JD is going to have Speech therapy on Mondays and Wednesdays. He has a rest room in the library and the nurses office, for when the work and pain gets too much for him. His aid is learning how to notice when he needs some breaks, and also when he sounds like he is backing up a little in his vocal chords.
One thing I'm a bit concerned with, and will need to keep a close eye on, is that they are separating him out. I asked if this is just for now, or for the remainder of time. And it appears like it's going to be a thing I'll have to address. I understand JD's safety is part of their concern, but I don't feel my son should be segregated out during some of the few social times of his day. It's hard enough to get him in enough when he's going to PT, OT and Speech. Not to mention that he is only on half days for right now. I can see them doing it for the first couple days till they know and feel comfortable, but he should be in his class by next week. I hate to make waves, so I need to figure out where everyone feels it is best.
I'm doing math with him at home, since he gets out before that class. The work sent home honestly only took him about 5 minutes to complete. So we spent a little more time doing some of the worksheets he had left from being out. So added another half hour or so to his busy day, and he tolerated it really well.
But all in all, he had a great first day back. He loved it. He's happy. He's a bit tired tonight, but that's to be expected. We'll see how the rest of the week goes. Especially since he's used to being busy on Mondays, Wednesdays and Fridays for therapy, while Tuesday and Thursday were his rest days.
But early to bed for my little man. For my Super Hero has great things to achieve, but always surprising me with his will, determination and strength!
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