Woohoo!!! Jimmy's skin issues are nothing - the dermatologist called it "lichen nitidus." It will come and go into his teens, then will go away eventually. No cause for it, and no creams take care of it, but it's not itchy and won't cause any problems. I walked out of the office feeling so happy that this appointment went so well and there's nothing wrong!!!!! Quite a change from other appointments!!!
We go on Thursday of next week to the neurosurgeon to hear the results of the mri scan... I'm expecting to hear that they will just monitor it yearly. That's the best case scenario I think...
Got the "ultra fine nano" needles for his insulin pen today. They're supposedly better since they're so small that we no longer will have to pinch his skin to give him the shot - I thought that would be better, too. Well, wouldn't you know - Jimmy doesn't like it. I think it's the fear of something new. Time will tell.
On another note, I'm worried that Jenna has her own place to shine. I think this will do it: she was a good enough swimmer on the town team this year to be invited to "leagues" (the 6 teams in the league combine for one big final meet.) It was last night. She placed 2nd in freestyle which means she's the 2nd fastest in the league!!!!! It was her fastest time: 19.59 seconds!! She also placed 1st along with 3 other girls in the freestyle relay !! It was so exciting, and it came down to the final stroke - our girl's hand touched just before the other!! The whole place went wild!! Woohoo Jenna!! I'm so happy for her that she gets her own attention on her own merit. With all the focus on Jimmy, Jenna still gets a chance to shine. I think it's important for her in all of this craziness around us lately! She'll get more accolades at tomorrow's swim team party when she receives her ribbons.
Peace,
June
Thursday, July 29, 2010
Tuesday, July 27, 2010
dermatologist appt. today...
Off to Dr. Shin in Hackensack at 4 today... The endocrinologist wanted to send him to get his skin issues checked out - Evidently, there is a link between Juvenile Diabetes and exema. Jimmy had TERRIBLE exema on his hands this winter to the point where they were cracked and bleeding. Eucerine worked well, but we were slathering his hands several times a day and also at night. He's also got funny patches of skin on his torso and shoulders - little bumpy patches. They're different than the patches on the backs of Jenna's arms (which has a name, but I can't think of what it is.)
So, we'll get it checked out today... Dr. Aisenberg (the endocrinologist) also wanted to have his humongous lymph nodes on his neck checked out. You can see them from across the room, and they've been there for over a month now. The pediatrician said they're normal and will go away. After 3 weeks or so, they were sitll there, and Dr. A. said we might as well get them checked out when we went to the dermatoligist.
I'd like a magic cream or pill (or wand) to make this all go away.
Peace,
June
So, we'll get it checked out today... Dr. Aisenberg (the endocrinologist) also wanted to have his humongous lymph nodes on his neck checked out. You can see them from across the room, and they've been there for over a month now. The pediatrician said they're normal and will go away. After 3 weeks or so, they were sitll there, and Dr. A. said we might as well get them checked out when we went to the dermatoligist.
I'd like a magic cream or pill (or wand) to make this all go away.
Peace,
June
Thursday, July 22, 2010
1/2 guess work...
Well, the field trip was a success!!! He came home at a decent blood glucose level, so we know that exercise is a good thing! Bounce u was "fun" according to Jimmy - so descriptive, right?... The counselor said that he sang with the other kids on the bus ride and was so excited and happy! So glad it went well. He fell asleep at about 5:30 yesterday evening, so I know it wore him out!
On another note, the novalog pen (that delivers his mealtime shots) had a malfunction the other day - First, the cap mysteriously disappeared. Still yet to be found (but we put another cap on from our back up...) Then, the screw mechanism somehow became too low to push up the insulin - he had been too high a couple times in a row, so I think it may have been malfunctioning for a few shots. ugh... It's hard enough to get his levels in range when he is getting the correct insulin!!
I was able to fix it without a problem, but I have no idea why it happened... So now I'll be checking the pen with every shot, too. Just one more step.
Someone asked me what it was like to have to try to get his blood glucose levels in check. I thought about it for a minute, and described it as:
1/2 calculations and 1/2 guess work.
It's 3 math problems at every meal - calculate the amount of carbs he eats first (if you ever need to know how many carbs are in a slice of pizza, a banana or a dunkin donut with strawberry frosting and sprinkles, just ask me). Then the amount of carbs he eats gets divided by either 40 or 50 depending on the meal. Then add that answer to his current blood glucose level minus his target number of 150 then divided by 180 - that's the correction bolus number.
Good thing I'm good at math.
Then, the guess work comes in... if he's supposed to get between 1 and 1 1/2 units of insulin, I have to think of what he's going to be doing... if it's a rainy day and he's going to be chilling out, I give him a higher dose. But, if I know he's going to be running around or in the pool all day, then I have to go with the lower number... Guess work. Then I have to allow for the fact that a carb is not a carb... 30 carbs of a banana is not the same as 30 carbs in juice. The carbs in the juice is instant, where the banana carbs will not absorb as quickly. If he has pancakes and bacon, the fat in the bacon will slow down the absorption of the carbs, so that could result in a high later in the day. guess work...
Even when I have days where we've done everything perfectly, there are some glucose levels that come back high... I don't know why, and that's frustrating.
It's constant. Evidently, every high and every low leaves a mark. It's important for him to be within range consistently, and it's hard to do that with all of the guess work.
Jimmy is a seemingly happy healthy kid, and Jim and I will do all we can to keep it that way. Math problem by math problem, one day at a time.
Peace,
June
On another note, the novalog pen (that delivers his mealtime shots) had a malfunction the other day - First, the cap mysteriously disappeared. Still yet to be found (but we put another cap on from our back up...) Then, the screw mechanism somehow became too low to push up the insulin - he had been too high a couple times in a row, so I think it may have been malfunctioning for a few shots. ugh... It's hard enough to get his levels in range when he is getting the correct insulin!!
I was able to fix it without a problem, but I have no idea why it happened... So now I'll be checking the pen with every shot, too. Just one more step.
Someone asked me what it was like to have to try to get his blood glucose levels in check. I thought about it for a minute, and described it as:
1/2 calculations and 1/2 guess work.
It's 3 math problems at every meal - calculate the amount of carbs he eats first (if you ever need to know how many carbs are in a slice of pizza, a banana or a dunkin donut with strawberry frosting and sprinkles, just ask me). Then the amount of carbs he eats gets divided by either 40 or 50 depending on the meal. Then add that answer to his current blood glucose level minus his target number of 150 then divided by 180 - that's the correction bolus number.
Good thing I'm good at math.
Then, the guess work comes in... if he's supposed to get between 1 and 1 1/2 units of insulin, I have to think of what he's going to be doing... if it's a rainy day and he's going to be chilling out, I give him a higher dose. But, if I know he's going to be running around or in the pool all day, then I have to go with the lower number... Guess work. Then I have to allow for the fact that a carb is not a carb... 30 carbs of a banana is not the same as 30 carbs in juice. The carbs in the juice is instant, where the banana carbs will not absorb as quickly. If he has pancakes and bacon, the fat in the bacon will slow down the absorption of the carbs, so that could result in a high later in the day. guess work...
Even when I have days where we've done everything perfectly, there are some glucose levels that come back high... I don't know why, and that's frustrating.
It's constant. Evidently, every high and every low leaves a mark. It's important for him to be within range consistently, and it's hard to do that with all of the guess work.
Jimmy is a seemingly happy healthy kid, and Jim and I will do all we can to keep it that way. Math problem by math problem, one day at a time.
Peace,
June
Wednesday, July 21, 2010
First Field Trip Today!
Well, he's off! Jimmy headed right out the door to go on his camp field trip today to Bounce U in Paramus! He's so excited, and I'm a nervous wreck!!!
He's got his "kit" (that's what we call his diabetes supply bag), his snack, and one of the counselors is going to be his shadow today.
I can't believe he's going on a bus to his first field trip!!!! A big boy!!! I know he'll have a blast - just keeping my fingers crossed that his blood glucose levels don't drop drastically with all of the exercise - but he should be ok...
I'll post later about the trip!
Peace,
June
He's got his "kit" (that's what we call his diabetes supply bag), his snack, and one of the counselors is going to be his shadow today.
I can't believe he's going on a bus to his first field trip!!!! A big boy!!! I know he'll have a blast - just keeping my fingers crossed that his blood glucose levels don't drop drastically with all of the exercise - but he should be ok...
I'll post later about the trip!
Peace,
June
Friday, July 16, 2010
Happy News!!
Jimmy lost a tooth last night!! He said, "Hey Mom, my tooth just fell out!!! I just knocked it out with my tongue!!!" The tooth fairy brought him $20 - I guess for all his trouble lately!!
Thursday, July 15, 2010
Back to Juvenile Diabetes...
I'm reading a book called "The Challenge of Childhood Diabetes: Family Strategies for Raising a Healthy Child," by Laura Plunkett. I found a passage from the book that hit home:
"Some days I could sit back and say that we had no control over the course of [his] illness. I found comfort in the belief that we were doing the best we could and that we couldn't know what the future would bring... In my philosophical moments, decisions became easier because all I could do was try my best. I'd think, '[He] has his own path, I have mine, and we have to accept whatever life bring us.' At those times, I'd feel peaceful and strong. However, when I had to decide whether to interrupt him for an extra dose of insulin or let him continue playing with a friend, I felt painfully conflicted. One voice would say, 'Let him be a kid,' and the other would respond, 'Every high leaves its mark. Every low is another assault on his system. You're irresponsible if you don't step in.' As a result, I was still lying in bed most nights, my head a jumble of thoughts, trying to come up with some plan... to make the next day's numbers improve."
Although the JD has never taken a back seat, it's been overshadowed lately... Since our April 1st diagnosis of Juvenile Diabetes, here's the rundown of Jimmy's encounters...
-trip in the ambulance for a bat to the head
-CT scan to rule out skull fracture
-skull fracture negative, but they found an Intercranial Arachnoid Cyst
-visit with the pediatric neurosurgeon
-5 stitches on his shin for a mis-step on a non moving escalator
-one cavity filled on a baby tooth
-mri for a baseline of the arachnoid cyst
We're waiting for an appointment with the neurosurgeon for the results of the mri, so until then, we're back to dealing only with the juvenile diabetes part of Jimmy...
I will continue to write about the trials and tribulations of Jimmy and juvenile diabetes. I'm finding comfort in getting it all down. It's been quite a blur these last 3 months, and I might want to remember it all one day.
Peace,
June
"Some days I could sit back and say that we had no control over the course of [his] illness. I found comfort in the belief that we were doing the best we could and that we couldn't know what the future would bring... In my philosophical moments, decisions became easier because all I could do was try my best. I'd think, '[He] has his own path, I have mine, and we have to accept whatever life bring us.' At those times, I'd feel peaceful and strong. However, when I had to decide whether to interrupt him for an extra dose of insulin or let him continue playing with a friend, I felt painfully conflicted. One voice would say, 'Let him be a kid,' and the other would respond, 'Every high leaves its mark. Every low is another assault on his system. You're irresponsible if you don't step in.' As a result, I was still lying in bed most nights, my head a jumble of thoughts, trying to come up with some plan... to make the next day's numbers improve."
Although the JD has never taken a back seat, it's been overshadowed lately... Since our April 1st diagnosis of Juvenile Diabetes, here's the rundown of Jimmy's encounters...
-trip in the ambulance for a bat to the head
-CT scan to rule out skull fracture
-skull fracture negative, but they found an Intercranial Arachnoid Cyst
-visit with the pediatric neurosurgeon
-5 stitches on his shin for a mis-step on a non moving escalator
-one cavity filled on a baby tooth
-mri for a baseline of the arachnoid cyst
We're waiting for an appointment with the neurosurgeon for the results of the mri, so until then, we're back to dealing only with the juvenile diabetes part of Jimmy...
I will continue to write about the trials and tribulations of Jimmy and juvenile diabetes. I'm finding comfort in getting it all down. It's been quite a blur these last 3 months, and I might want to remember it all one day.
Peace,
June
MRI Today...
So, to follow up on Jimmy's Intercranial Arachnoid Cyst, we had to be at the MRI today at 10 for a 10:30 appointment. It took a took a nurse, the technician, the anesthesiologist, another, and me to hold him down to get the iv in. They can't believe how strong he is. He was so loud and sweaty and scared, I just wanted to take him away and make everything alright.
I think he was exceptionally having a hard time since he had to have blood taken on Monday. Jim took him for his physical, EKG & blood work to get Medical Clearance for the MRI. The physical and EKG were fine and then they had to wait at Labcorp for over an hour. When they were finally called in, Jimmy started out a bit scared, but was well behaved and sitting with Jim quietly. The stupid technician poked poor little arm 6 times before he said to Jim, "Your boy no cooperate." Jim was furious, and told the guy to try the other arm or get someone else. Poor Jimmy WAS cooperating! The guy decided to try the other arm and was successful the 2nd time. I call that incompetence, and poor Jimmy was traumatized - when he came home, he fell into my arms and cried for a 1/2 hour. Poor little kid.
So, it kind of explains why he gave all of the staff a run for their money this morning at the MRI. They finally were able to get the IV in, and he calmed down a bit (still in my arms.) We had to go into the next room to get him onto the table, when he started freaking out again... I hugged him tight, and he clung on to me with all of his might. He would not lie down for anything, so they decided to give him a bit of anesthesia to relax him a bit. His whole body just took a sigh and turned noodlish. He was just so relaxed and able to let go and lie down. It was then then that they asked me to leave the room, and as I did I asked them for some of that medicine to take home with me!! LOL!!!
When he came out of the mri into recovery, he was a riot - you know that youtube video of the boy who had just been to the dentist and had obviously had some laughing gas? Well, it was pretty close - I had gotten him some silly bands at the gift shop to give him when he woke up. They were in the shapes letters, so I plucked out the letters J-I-M-M-Y to give him when he woke up. As his eyes were opening, I dangled the J in front of him to perk him up (he just loves his silly bands.) He lit up a bit and as he tried to grab it, his fingers were grasping air about 2 inches northwest of the J!! As I gave him the I, the nurse and I asked him what letter it was, but he didn't answer. Then I handed him the first M, and when we asked him what letter it was, he said, "I." We had to bite our lip to not laugh! His coordination was off and his thinking was delayed!! It was awfully cute...
Anyway, I have the MRI pix, and Jim and I have no idea how to read them, but we can definitely see the cyst - and from so many different angles. I think we shouldn't have looked at the cd. We see the neurosurgeon in early August. I'll try not to worry until he gives me a reason to. Jimmy's a happy little boy, and that's what we'll focus on for now...
Peace,
June
I think he was exceptionally having a hard time since he had to have blood taken on Monday. Jim took him for his physical, EKG & blood work to get Medical Clearance for the MRI. The physical and EKG were fine and then they had to wait at Labcorp for over an hour. When they were finally called in, Jimmy started out a bit scared, but was well behaved and sitting with Jim quietly. The stupid technician poked poor little arm 6 times before he said to Jim, "Your boy no cooperate." Jim was furious, and told the guy to try the other arm or get someone else. Poor Jimmy WAS cooperating! The guy decided to try the other arm and was successful the 2nd time. I call that incompetence, and poor Jimmy was traumatized - when he came home, he fell into my arms and cried for a 1/2 hour. Poor little kid.
So, it kind of explains why he gave all of the staff a run for their money this morning at the MRI. They finally were able to get the IV in, and he calmed down a bit (still in my arms.) We had to go into the next room to get him onto the table, when he started freaking out again... I hugged him tight, and he clung on to me with all of his might. He would not lie down for anything, so they decided to give him a bit of anesthesia to relax him a bit. His whole body just took a sigh and turned noodlish. He was just so relaxed and able to let go and lie down. It was then then that they asked me to leave the room, and as I did I asked them for some of that medicine to take home with me!! LOL!!!
When he came out of the mri into recovery, he was a riot - you know that youtube video of the boy who had just been to the dentist and had obviously had some laughing gas? Well, it was pretty close - I had gotten him some silly bands at the gift shop to give him when he woke up. They were in the shapes letters, so I plucked out the letters J-I-M-M-Y to give him when he woke up. As his eyes were opening, I dangled the J in front of him to perk him up (he just loves his silly bands.) He lit up a bit and as he tried to grab it, his fingers were grasping air about 2 inches northwest of the J!! As I gave him the I, the nurse and I asked him what letter it was, but he didn't answer. Then I handed him the first M, and when we asked him what letter it was, he said, "I." We had to bite our lip to not laugh! His coordination was off and his thinking was delayed!! It was awfully cute...
Anyway, I have the MRI pix, and Jim and I have no idea how to read them, but we can definitely see the cyst - and from so many different angles. I think we shouldn't have looked at the cd. We see the neurosurgeon in early August. I'll try not to worry until he gives me a reason to. Jimmy's a happy little boy, and that's what we'll focus on for now...
Peace,
June
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