Dear Mr. Jamie James,
You're getting to be an old man, my friend! Sometimes I feel as though this time has flown by and others, it feels as though time is just standing still. I feel as though it was just yesterday that we welcomed little 5 pound 15 ounces you into our family and at the same time, it feels as though you've always been here.
Today, my feelings are a mixed bag. I am tremendously happy to celebrate another (half) landmark in your life. Every single day I am thankful that you are here. There are so many times that one of your seizures could've taken you from us in the night. Just stolen away. No goodbye. No answer. No reason. I cherish every second I have you in my life. These hard times have allowed me to see how much good there is in our world. Good, that until we struggled, was overlooked and over shadowed by normalcy.
On the flip-side of this joyous half landmark, is the realization that another 6 months have passed. We are inching closer and closer to your third birthday. A day that, once again, I look forward to celebrating but am honestly dreading at the same time. When you turn three, all of your Early Intervention programs end. You'll have to start over at a new school with all new therapists. I'll have to trust others with you that I don't know that well. Not only do I have to trust that they will teach you your basic academics but that they'll teach you your much delayed life skills. They'll need to teach you to speak, to feed yourself, to sit, to walk, to be a pre school boy. And, in turn I have to trust that they will not harm you.
If you can't speak, you can't tell me if they hurt you.
If you can't sit, I have to trust that they won't leave you lying on the floor.
If you can't walk, I have to trust they will not let you fall or remain in harm's way.
I have to trust a lot and I am not ready to yet.
These next 6 months we have a lot to work on. Dada and I are going to move the dining room out into the garage and in it's place we're building you your own personal baby gym. We are planning out a strict schedule for you to work on all areas that require improvement. I'm going to recruit the help of your physical, occupational, and speech therapists. You are going to hate me but, someday, you will thank me. Your physiatrist in Boston, Dr. Brennan, informed us at your last visit that children who are sitting by age 3 typically walk whereas children who are not will remain in a wheelchair for life. I refuse to sit back and watch my boy be resigned to a wheelchair for his life. You are only at the beginning of your life and you are not going to remain seated throughout this show. You are going to feel what it is like to walk, to swim, and to run.
I am your mother and this is my promise:
I will do absolutely everything in my power to make sure you grow into the man that you are supposed to be.
So, for the next 6 months, you will report to baby boot camp every single day. Whether it is a weekday, weekend, or holiday is of no importance. I am going to work you so hard you will hate me. But, so help me God, I will walk you to the bus stop on your first day of kindergarten and I will watch you step up onto that bus by yourself.
We're going to make this happen kid. I see great things for you.
All my love,
Mama
Saturday, November 26, 2011
Day 13
Day 13
I know that 13 is not considered a lucky number and for today, that rang true.
James has had 45 - 50 seizures. I'm not sure of the exact number because somewhere along the way my husband and I just lost count. There were two separate occurrences. The first was at 8AM consisting of about 25 seizures and then again at 9PM consisting of another 25 - give or take. Both required the use of his Diastat prescription. Fortunately, the dose was enough to stop the myoclonic seizures and take him out of status.
Due to the seizures and the medicine, James was off all day. He was very tired and nowhere close to his usual routine. Also, he hasn't urinated today. Not once. He's had plenty to drink and doesn't appear to be dehydrated. Still, though, no wet diapers. I'm going to have to keep a close eye on this because it's new, and strange. He has been having fewer wet diapers since starting the diet but never none. I'll have to call his PCP in the AM if nothing happens overnight.
Today was mostly cons...
Multiple myoclonic seizures continuing back to back for 10+ minutes at two separate occasions.
Had to use Diastat to stop both AM and PM seizure clusters.
No urination.
Pro ...
his rescue medicine worked both times it was required.
I know that 13 is not considered a lucky number and for today, that rang true.
James has had 45 - 50 seizures. I'm not sure of the exact number because somewhere along the way my husband and I just lost count. There were two separate occurrences. The first was at 8AM consisting of about 25 seizures and then again at 9PM consisting of another 25 - give or take. Both required the use of his Diastat prescription. Fortunately, the dose was enough to stop the myoclonic seizures and take him out of status.
Due to the seizures and the medicine, James was off all day. He was very tired and nowhere close to his usual routine. Also, he hasn't urinated today. Not once. He's had plenty to drink and doesn't appear to be dehydrated. Still, though, no wet diapers. I'm going to have to keep a close eye on this because it's new, and strange. He has been having fewer wet diapers since starting the diet but never none. I'll have to call his PCP in the AM if nothing happens overnight.
Today was mostly cons...
Multiple myoclonic seizures continuing back to back for 10+ minutes at two separate occasions.
Had to use Diastat to stop both AM and PM seizure clusters.
No urination.
Pro ...
his rescue medicine worked both times it was required.
Day 12
Day 12 ...
Today was a total of 24 seizures. Not great, but not terrible either. It seems as though we're alternating good days and bad days. Hopefully it will start to lean more towards good on the spectrum.
Nothing really new to report.
I feel as though I spend all of my time preparing teeny tiny meals. lol.
...but ya gotta have faith.
Today was a total of 24 seizures. Not great, but not terrible either. It seems as though we're alternating good days and bad days. Hopefully it will start to lean more towards good on the spectrum.
Nothing really new to report.
I feel as though I spend all of my time preparing teeny tiny meals. lol.
...but ya gotta have faith.
Thursday, November 24, 2011
Day 11 - Happy Turkey Day!
If the only prayer you said in your whole life was, "thank you," that would suffice.
~Meister Eckhart
It's day 11 and I'm having one of those moments where I wish this would hurry up and work.
but...
It's also Thanksgiving and I need to remember to be thankful for where we're at and how far we've come.
Seizure wise, James had a great day with a total of 4! The down side is that he slept until 9AM (originally I was quite thankful for this!), napped from 1:30-5:30, and was back asleep at 8. He was very lethargic today. I'd blame it on the turkey but, he ate chicken I had prepared at home. No faulting the tryptophan for this sleepiness.
While awake, he was quite happy. He giggled and babbled. He's such an awesome kid!
Today, I've also noticed that his eating skills have improved dramatically. The coordination it takes to chew and swallow has really come along. His occupational therapist, Barbara, is going to be amazed! Thumbs up! :)
Also, I thought his battle with constipation had returned but, I was wrong. It appears this diet is still doing great things for him GI wise. Thumbs up again!
So...
Thankful for:
-less seizures than yesterday
-improved chewing/swallowing/oral coordination
-continued regularity of GI system
Not so thankful for:
-VERY lethargic today
~Meister Eckhart
It's day 11 and I'm having one of those moments where I wish this would hurry up and work.
but...
It's also Thanksgiving and I need to remember to be thankful for where we're at and how far we've come.
Seizure wise, James had a great day with a total of 4! The down side is that he slept until 9AM (originally I was quite thankful for this!), napped from 1:30-5:30, and was back asleep at 8. He was very lethargic today. I'd blame it on the turkey but, he ate chicken I had prepared at home. No faulting the tryptophan for this sleepiness.
While awake, he was quite happy. He giggled and babbled. He's such an awesome kid!
Today, I've also noticed that his eating skills have improved dramatically. The coordination it takes to chew and swallow has really come along. His occupational therapist, Barbara, is going to be amazed! Thumbs up! :)
Also, I thought his battle with constipation had returned but, I was wrong. It appears this diet is still doing great things for him GI wise. Thumbs up again!
So...
Thankful for:
-less seizures than yesterday
-improved chewing/swallowing/oral coordination
-continued regularity of GI system
Not so thankful for:
-VERY lethargic today
Day 10
Day 10 ... well, actually, let me start with night 9.
Night 9 James was very irritable. I hadn't seen him act that way in a long time. I'd get him to settle down and stop fighting me and then eventually he would doze off. I'd walk him into his room, lie him in his crib, hook him up to his pulse/ox and very quietly sneak out. Not even 5 minutes later he'd start fussing all over again. We did this little song and dance until about 2AM. I think he eventually just wore himself out from all the crying, arching, and hitting.
I'll now consider it Day 10...
At about 4:30, Mike and I were woken up by a sound that we hadn't heard in awhile. The high pitched beep from the pulse/ox. We rushed downstairs and James was in the middle of a seizure where his oxygen level dropped down to 70%. He came out of it on his own without the use of emergency meds but did have some minor seizures that followed most likely a postictal state. We brought him up into our bed and he did manage to fall back asleep for a few hours.
The rest of the day was pretty run of the mill. He did have some of his neurological fits and his final seizure count was at 17, not including the tonic-clonic and it's postictal ones. I'm not sure how they want me to count that - or if they want me to count the postictal twitches. I made a note of it in his binder.
SO...
Pro/con combo : had a tonic-clonic seizure but it was only one, no relapse, and he came out of it on his own. He did not require use of Diastat and the postictal stage was short - maybe 10 minutes.
Night 9 James was very irritable. I hadn't seen him act that way in a long time. I'd get him to settle down and stop fighting me and then eventually he would doze off. I'd walk him into his room, lie him in his crib, hook him up to his pulse/ox and very quietly sneak out. Not even 5 minutes later he'd start fussing all over again. We did this little song and dance until about 2AM. I think he eventually just wore himself out from all the crying, arching, and hitting.
I'll now consider it Day 10...
At about 4:30, Mike and I were woken up by a sound that we hadn't heard in awhile. The high pitched beep from the pulse/ox. We rushed downstairs and James was in the middle of a seizure where his oxygen level dropped down to 70%. He came out of it on his own without the use of emergency meds but did have some minor seizures that followed most likely a postictal state. We brought him up into our bed and he did manage to fall back asleep for a few hours.
The rest of the day was pretty run of the mill. He did have some of his neurological fits and his final seizure count was at 17, not including the tonic-clonic and it's postictal ones. I'm not sure how they want me to count that - or if they want me to count the postictal twitches. I made a note of it in his binder.
SO...
Pro/con combo : had a tonic-clonic seizure but it was only one, no relapse, and he came out of it on his own. He did not require use of Diastat and the postictal stage was short - maybe 10 minutes.
Tuesday, November 22, 2011
Day 9
Day 9 is the day we got back into our usual routine. On Tuesdays James has speech therapy and physical therapy in the morning.
Speech therapy - Caitlyn agrees (YES!) that he is making more sounds. :) More often and more of them. The downside of therapy this morning was the seizure activity. James was still sleeping when she arrived so I had to wake him. I've found that if I mess with this little man's sleep his mind is affected by it. If I wake him from sleep, either overnight or nap time, he always seems to have some sort of seizure activity that follows. 17 myoclonic ones in this case. He did settle down and they resolved on their own which was a good sign.
Physical therapy - he was amazing! I thought for sure he'd be too tired but what a trooper! He sat, stood, played, babbled. He did anything and everything that Kristie asked him to do. What a great session to watch! Kristie also commented on my new finding of the day - calm.
Ohhhhhmmmmmm. :)
James body seems SO much more relaxed now. He used to have these "neurological fits" quite often throughout the day which never seemed to stem from one particular source. But, today, his body was quiet. He looked overall relaxed. His only "fit", I don't know what they actually are so this is the best I can describe it, came after dinner. It also came about 30 minutes after his dose of Clonazepam. I think his body has a strange reaction to it. I think it makes him jittery rather than calm. Kind of like I can't take Tylenol PM. I will fall asleep initially but then I wake up and pace the house with muscle spasms until it wears off. Super relaxing. Again, the weird quirks were most likely inherited from me. lol.
Spoke with Toni, his dietitian today also. She said that moderate - large is fine for the ketones. Any lower or higher and we'll have to reassess his dietary restrictions. As for now, continue the course.
So, to sum it up...
Good day!
Pros:
much more calm/relaxed overall
increased verbal sounds and use
Cons:
increased seizure activity since yesterday
Questions:
Adverse reaction to Clonazepam?
Sleep disturbance cause of seizures? (this is probably one of those "duh" questions but worth noting. My blog. My rules.)
Speech therapy - Caitlyn agrees (YES!) that he is making more sounds. :) More often and more of them. The downside of therapy this morning was the seizure activity. James was still sleeping when she arrived so I had to wake him. I've found that if I mess with this little man's sleep his mind is affected by it. If I wake him from sleep, either overnight or nap time, he always seems to have some sort of seizure activity that follows. 17 myoclonic ones in this case. He did settle down and they resolved on their own which was a good sign.
Physical therapy - he was amazing! I thought for sure he'd be too tired but what a trooper! He sat, stood, played, babbled. He did anything and everything that Kristie asked him to do. What a great session to watch! Kristie also commented on my new finding of the day - calm.
Ohhhhhmmmmmm. :)
James body seems SO much more relaxed now. He used to have these "neurological fits" quite often throughout the day which never seemed to stem from one particular source. But, today, his body was quiet. He looked overall relaxed. His only "fit", I don't know what they actually are so this is the best I can describe it, came after dinner. It also came about 30 minutes after his dose of Clonazepam. I think his body has a strange reaction to it. I think it makes him jittery rather than calm. Kind of like I can't take Tylenol PM. I will fall asleep initially but then I wake up and pace the house with muscle spasms until it wears off. Super relaxing. Again, the weird quirks were most likely inherited from me. lol.
Spoke with Toni, his dietitian today also. She said that moderate - large is fine for the ketones. Any lower or higher and we'll have to reassess his dietary restrictions. As for now, continue the course.
So, to sum it up...
Good day!
Pros:
much more calm/relaxed overall
increased verbal sounds and use
Cons:
increased seizure activity since yesterday
Questions:
Adverse reaction to Clonazepam?
Sleep disturbance cause of seizures? (this is probably one of those "duh" questions but worth noting. My blog. My rules.)
Day 8
Week #2 in the house! lol.
Day 8 was great seizure wise. 4 total! :o)
However, James is still super lethargic. I cancelled his pool therapy over at South Shore Hospital because he just wanted to keep on napping. Why fight to keep him awake if this is what his body is telling him to do? I let him have a lazy day and sleep in.
He stayed in bed for most of the day but when he woke up, he was like a new little man. His eyes were so much clearer and he giggled and belly laughed, oh, it was wonderful. I'm hoping he's turning a corner.
Very cautiously enthusiastic.
Pros: clear/bright eyed. Better concentration. Decreased seizures.
Cons: very lethargic.
On to the next ...
Day 8 was great seizure wise. 4 total! :o)
However, James is still super lethargic. I cancelled his pool therapy over at South Shore Hospital because he just wanted to keep on napping. Why fight to keep him awake if this is what his body is telling him to do? I let him have a lazy day and sleep in.
He stayed in bed for most of the day but when he woke up, he was like a new little man. His eyes were so much clearer and he giggled and belly laughed, oh, it was wonderful. I'm hoping he's turning a corner.
Very cautiously enthusiastic.
Pros: clear/bright eyed. Better concentration. Decreased seizures.
Cons: very lethargic.
On to the next ...
Subscribe to:
Posts (Atom)