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!
taking our mind of things
Friday, January 30, 2015
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!
Friday, January 23, 2015
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 spentdays 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.
I spent
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!
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!
Thursday, January 22, 2015
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.
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!
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!
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!
Saturday, January 17, 2015
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 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.
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!
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.
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.
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 
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!
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