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.

Zoo trip

A view of the Lions.

It's about time we could say we got out and about. Big man was so excited to be able to get out and do something he has been wanting to do for so long. We went to the Zoo with JD's new chair! The weather was beautiful. Not much else to add, but lots of happy JD photos!

Liberty Mobility

We are on Team Liberty! 

I can not say enough good things about the owner Paul Long, and his crew at Liberty Mobility. It is because of them that JD has something he needed. But they are also spreading awareness for something that has become dear to my heart.

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.

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

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!!

A few weeks ago, Bryan's military unit got in touch with him about JD and his needs. They questioned what was that JD needed, and we mentioned his mobility and feeding issues, etc. Then we got a call back that a gentleman in the area owned a business dealing with wheelchairs, and he wanted to donate one to JD! I was amazed. Then I found out it wasn't just any chair, but a power chair that would allow him to help himself. He didn't need to depend on anyone to get him around. The unit did the reveal at a final formation, and JD got to be the center of attention to the hero's he looks up to.

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!!

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!

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 my little 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!

*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!

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 kids enjoy 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!

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!

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?

Swollen eyes and very itchy

The rash has white centers

I cleared his room, stripped it. Called the Primary and we took him in again.

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!

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!

"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!

spread awareness

A couple months ago the nation was up in arms that we had 2 ebola patients within the country limits. Everyone and everything went on high alert. (Which, in one sense I do agree with, so stay with me.) It was all over all news sources, everyone knew of the dangers, and what to look for. However, during this same time, kids were getting sick. A mystery paralysis was "silently" spreading. Silently, in that it wasn't shared. Not common knowledge. To date, the count is 109 kids. NOT TWO... 109!! Why is it so quiet? Why are we so hush hush? These are kids that are looking at life from a new normal. Some kids may never get to walk, some may never use an arm, and others may not get to eat normal food! Why isn't there more awareness? To me, this should be on the news! People should know the threat is real. Especially when the information shared by the CDC (once you take time to go looking for it!) is that it is expected to be worse next year! I found out last night about a few more cases out west. Someone mentioned that Boston had a case or two. Why haven't I heard anything? This is why I hate the news. It's so contrived and set to certain spins or ideals. Yes, I am ranting. I have a right to! I also feel it's important to, in order to ensure that others do realize there is a threat. Do I want to see a panic, no. But I don't want anyone else to have to experience the feeling of helplessness and lost feeling I went through trying to find out what was happening with my son!

I spent days weeks MONTHS feeling alone. Feeling like I was useless because I couldn't do the one thing a mom was suppose to do. Protect their child. Knowing I wasn't alone. This is something people need to know. And see there is somewhere to turn. There are others out there that are experiencing it. Others took the walk alone. And they need to know they do not have to walk alone like others have. 

Beginning of the end

I can see that light at the end of the tunnel. Today was suppose to be the official end of JD doing outpatient at the rehab, however, we decided his continued work with the speech therapist in regard to swallow was pretty important.

However, JD officially graduated from inpatient therapy for OT and PT today. It was a bitter sweet moment to say goodbye to his outpatient therapists. But a moment that made me happy. I can see a light at the end. I just hope it's not going to be a train. I don't need any further surprises.

Come Monday, little man begins school for 1/2 day. The school is going to take over his OT and PT therapies. If all goes well, he will be done at the end of the year. If not. He will return to rehab for the summer. But for now. We are so much closer to being done.

I'm looking at getting the other two back in swimming. Though JD isn't allowed to just yet. Mainly because the pools won't allow him in with his tube. Come summer, his doctor said we can re-evaluate him and possible get him in the therapy pool to work with him and see how he's going to do. That will be great!

See, things are returning to "normal." I just can hope one day, that will be the normal we so loved before all of this!

learning more ever day

Everything with dealing with JD's needs is a giant learning curve! Every day I learn something else as part of his care. In the beginning it was how to deal with his feeding tube. Then it was difference between the NG and the Dobhoff. How to work the feeding pumps. Move on the therapies. All wheelchairs work differently. And then PEG care. I could write my own manual by now.

Today... I learned how to change his PEG. I'm not going to say it was as easy and cut and dry as the doll they let me practice on.

Mic-key Button the day after surgery. 

The three surrounding buttons were removed after a month.

The part that says lock gets removed between feeding. The remaining part is the PEG. 

For one thing. The doll didn't move, cry and act as if he was being murdered by the shear thought of this happening to it. My son on the other hand. Well let's just say if there were other patients in the office, they might assumed that the surgeon was doing a major surgery without anesthesia in her exam rooms! That was all while the PA was simply putting a warm washcloth on his stomach to help with some of the mucus.

But after getting him calmed, I was able to do it. Let me just say, I'm proud of my own instincts to not feed him anywhere close to the time he was going. They never said anything to me about it prior to taking him in. But I had thought about it earlier. The child has a small hole in his stomach. This hole is blocked by the PEG. I am removing said PEG. That would imply.... well, I'm sure you get the idea.

After a little more care to the granulated tissue growing. Which brought on another episode of someone trying to murder him. (Now mind you, when mommy pulled out the old Mickey Button and put in the new one, he didn't cry. He whimpered. But never cried. A warm washcloth and a Q-tip with medicine, that is the END OF THE WORLD!)

On Tuesday, we had to go to his primary pediatrician. He had sounded a bit congested and his therapists and I were a bit concerned he was possibly developing a second case of pneumonia. So after our morning doctor's, we shuffled off to the doctors. After a few minutes listening, he asked if JD had a nebulizer at home. We didn't I told him. Well, we do now. He also sent JD for a chest x-ray. It's like the learning (and hits) keep coming.

JD named his puppy nebulizer "Jake." I think it gives him a sense of calm. We both got into it pretty easily. Another easy learning curve. I guess after being the full time nurse for so long, these things seem like nothing. Right?!

We also did get the results back that he did have another pneumonia in the same location as before. We know the last one had cleared, as the doctor had seen JD between these episodes, and noted it was gone. It's felt that he is aspirating. We just don't know what. He's already on a limited diet. So tomorrow is a family meeting on diets, and where do we go from here. JD can't keep getting sick. Something has to be going on.

And while he is on antibiotics for this, he's also to continue the nebulizer. I think the doctor feels that just maybe his lung capacity was a bit impacted, and those muscles are weaker as well. And this might be just what he needs to strengthen them. I sure hope so. I'm tired of the little man being sick.


Now, I honestly always felt being a mom was going to be that learning curve. But never did I imagine how much I would learn. These are things I never thought I'd have to know!

Feeling of hope

This morning was wonderful with JD. As usual, he had his normal Tuesday and Thursday tutoring. But it was advised by his neuropsych doctor that just maybe we should also have a visit with his class. Now JD has had a couple stop-ins briefly while dropping his brother off. But this morning, he took that first step to return to his normal. A real life. Not full of non-stop doctors, hospitals and being made to feel different. Not that there wasn't a real life or normal with what we have been dealing with. But this is different. This is what a typical child should do.

So after dropping Ptolemy off at his class, we stopped in with the tutor to let her know we would be running a bit late. Left our coats, took a deep breath, and hand and hand we walked down the hall to his classroom.

"Mommy, my door is the second on the left!" JD so proudly informed me, as if I didn't already know.

The moment we walked in the door, his classmates all looked up. It was still morning routines, as everyone had just got in.

"JD'S HERE!" I heard many exclaim. Took me a few seconds to compose myself, and not let those few happy misty eyed tears escape.

Classmates gathered around him and he was swallowed up. I watched him disappear into classroom happenings with his friends. He fit in. No one treated him different. I saw him smile, I saw pain escape him. I saw for the first time in oh so long... him being a kid!!

The teacher had the class pick out their books for their book bins, and JD got to take part. His books were chosen so they would be ready for his return. I saw it feel more real for him. He felt still part of the group. They all took their bins to the carpet. And JD's best friend from before he was sick. The little boy he helped feel comfortable on that first day of school. The little boy he ran up to, since he had in him pre-k and saw he was scared and crying, and put his hand around him and asked to sit next to him. Well that little boy was beaming ear to ear as he sat next to JD. Normal child chit chat was commenced. Not "how was therapy? How are you feeling? What happened?" But childhood fun. Talking about the lego book in hand, or toys. For that brief moment, he was a kid again. He wasn't sick, he didn't have limitations. He was HIMSELF. I saw him sit taller on the carpet with his friends. I saw him put his hand away from his neck, and fight to hold it on his own. I saw him want to be!

And I cried. I turned away from the group for that moment. I needed to. I realized my little man could handle himself.

The teacher let me know she had created an idea for us all to keep in touch with what was going on. And we both stepped back and watched in awe at the wonder of a group of friends can do! I mentioned how I wish I could take a picture, but didn't think it would be right. And she said, "Well I can!" And she did. And she captured that perfect moment. That moment locked in my mind. For that moment. He was the little boy that was sitting on that rug 4 months ago!!

Am I scared with him going back to school next week. Most definitely! Worried more than I can admit to anyone. But seeing that, seeing those few 20 minutes. I know my baby is going to be fine. More than fine...he is going to fly!

Getting back to the real beginning

John-Douglas was (and has always been) my miracle. He truly was!

After 6 miscarriages and a ectopic pregnancy, that sent me to the operating room. I was informed that I could never have kids naturally, as I have endometriosis. That news hit very hard. But my (ex)husband and I were not deterred. As we knew we wanted children. I was told the only way was if we went through IVF. However, while starting the IVF process, we found out we were expecting. That miracle was JD!

JD at 12 weeks

JD at 28weeks 5 days

JD was a very closely monitored while I was pregnant due to my previous history. Close to bi-weekly doctor appointments and monthly ultrasounds. I enjoyed watching him grow. As the weeks passed, I felt the tension decrease as I allowed myself to get excited. Could it be that I would finally have that miracle baby. So when my mom mentioned a shower, I was hesitant, but happy. However, we needed to plan it at the right time.

JD has always been a bit stubborn! Even in utero, he did things on his own time. At 28 weeks, he tried to come. The hospital gave me meds and after a few doses, were able to stop the pre-term labor. It was determined it would be important for me to get a few doses of steroids to improve his lungs, in case the medicine did not work. After 3 days in the hospital, I was sent home on more medicine and strict bed rest. I'll be honest, to be on a maternity ward and hearing babies, and knowing that you were not there (hopefully) to meet our little man just yet. He again tried at 32 weeks, and 34 weeks. All the times, medicine was used to stop him. It was noted I was not dilating, so we were safe to go each time.

Then when I was 36 weeks, I went into the hospital because of some serious side pain. The doctor when I went in kept me over night thinking it was a kidney stone, but monitoring JD. The morning doctor sent me home without a second thought. I told him that the pain I was experiencing that day was different than the day before. But he brushed me aside. But he ignored that it was different said he felt my cervix and it wasn't labor. (even if the monitor was noting constant contractions!) We made the hour drive home, and my water broke within minutes of walking in the door. My (ex) husband called the doctor, who said if it was really that, I needed to come back. I said I wouldn't go if it was still him. But it turned out he was the once for the night. So grudgingly we headed back. Making sure we had all of JD's things that he would need.

 The doctor yelled at me and said I was making it up. He did tests, but never came back to see me again. The next day, a new doctor came in to discharge me. She said that the night doctor said I was only in for monitoring. I said that my water had broke, and she looked puzzled. As the night doctor never noted that. She went in search of labs, and found that labs on the amniotic fluid did show I had ruptured! She was going to send me for an ultrasound to check levels, as to why would the night doctor say it hadn't, when labs said it was. But first said she would do a physical check. Within seconds she noted that it was indeed ruptured and cancelled the ultrasound! So I was hooked up and pitocin started, as my labor was not causing cervical change. At night the pitocin was stopped, and I was ordered to walk.

the sign in my room

Two days later, I was still in serious contraction pain, but no progress. I finally gave in and asked for the epidural, as I couldn't handle the contractions any longer. A couple minutes into it, my actual OB came in. He said he saw my name on the board, and came to see me. I told him I had been there for 4 days, to which he said no one ever contacted him like they should have! Seriously!?! Upon reading my charts, he immediately set out to consult with the doctor on call. Since it wasn't him, he couldn't order the c-section directly, but informed the on call of my situation and it was determined I had to go.

By 4:15pm on February 11th, I was whisked off to the OR. Scared. Heart racing. Frantic. I was told I needed to calm down. At 4:28pm, a screaming baby boy entered the world. After a brief introduction to me, he was whisked off to the doctors to be checked as meconium was found. After a few quick moments, he was deemed perfectly healthy with apgars of 9 and 10!

In recovery he was finally handed over to me. Other than a sacral dimple, my little man was perfectly healthy!! That night, I never slept. All the pain was finally over. I finally had my miracle!

My little man and his stuffed animals at the hospital the night he was born.

My miracle will always be just that! Every day he has proven that fact! Even now, he proves it even more!

The beginning of the journey

This is John-Douglas (JD). He may seem like your typical little boy. But to me, he is my Super Hero!

JD summer 2014

JD was your typical 5 year old boy, as you will see. Until one mystery took over our lives on October 6th, 2014. Since then, our normal has been transformed. The problem is. It's not only a mystery to us, but to the medical community at large. Join us as we explain and share. And the hopeful end is that we can tell you that the mystery is no more! Welcome to our family!

Our family Fall 2013

John-Douglas was a typical hyper child. He was very active, full of ideas and constantly on the go. He was adventurous. He enjoyed LOVED our family hikes. He had started the Adirondack Fire Tower challenge, and was loving the time out in nature. He loves animals. And would spend hours asking questions. His favorite places are at the Zoo, Museums and going hiking up in the mountains.

A true heart of gold. He is the oldest of 3. With a brother, Ptolemy who is 4, and a sister Kaitlyn, who is 3. He is still your typical brother, who enjoys playing pranks on his siblings, and being the demanding big brother.

Easter 2014

Day out with their scooters

Though he was not without faults. He is a strong willed little boy, who had very severe emotional outbursts. That a developmental Pediatrician labeled as Emotional Lability, along with ADHD. So he was always on the go, and at times a bit hard to handle. But he was (and still is) such an amazing little boy. Always smiling!

JD starting Pre-K in Feb. 2014

Last day of Pre-K June 2014

Wearing blue for Autism Awareness

Getting ready for swim class

Always a great brother (2013)

Climbing the rope bridge

Enjoying his favorite season - December 2013

Happy 5th Birthday big man - Feb. 2014

Always mommy's baby

We are a diverse family, but we are always full of laughs and fun. If we are not all together as a group, out in nature, we just do not feel complete. Playgrounds, zoos, museums and hiking. That is where you could find us! And it didn't matter what season it was. 

He definitely could put a spell on me! This little man has had my heart from the first sound of that first heartbeat! 

The view from one of the ADK fire towers

Down at the river

Swimming fun at grandma's! 

Getting ready to start the school year in September 2014!

Not only that, but he was very healthy. Of the family, he was the last I ever needed to worry about being sick. So that was our normal. But life throws curveballs. And well. We were given the biggest of them all!