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

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.....

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!

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. 

long overdue update

                                                             JD - October 2018

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

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.

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.

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!

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.