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Chance Update

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  • Mark and Amy
    We have had two HUGE accomplishments today. Chance is drinking from a sippy cup exclusively finally and he signed drink ......too cool! Got to find him a
    Message 1 of 7 , Sep 18, 2005
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          We have had two HUGE accomplishments today. Chance is drinking from a sippy cup exclusively finally and he signed "drink"......too cool! Got to find him a froggy sippy cup for his frog themed bday party....Ok now we have three big accomplishments.....Chance is trying to put his sock on right now.......Whoa no wonder he has been such a grouch lately....he had big things to do :)
      Hope this finds everyone well and everyone who can will make it to his bday party!!
                                Amy
      Mommy to Tyler (11), Kaylee (8), Spencer (7), and Chance (21 mo, SOD, pACC, ONH, DI, Hypothryoidism,
      Growth Hormone Deficiency, Adrenal Insufficiency and the biggest blue eyes around!!) Wife to a World of Warcraft wizard, Mark!!
      Chance's Website www.tknbychance.com
      Jacksonville, Florida
      http://groups.yahoo.com/group/fightingforchildsupportinfl
       
      "When there is nothing left but faith you realize faith is all you need"
       
       
      Having children makes you no more a parent than having a piano makes you a pianist
      Michael Levine
       
      To parents of special children, average is amazing!
    • tknbychance@comcast.net
      His fever is gone, he is sleeping, drinking, eating and peeing so we are doing good on that part. He is anemic, his thyroid is low,his potassium is low, his
      Message 2 of 7 , Nov 4, 2005
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        His fever is gone, he is sleeping, drinking, eating and peeing so we are doing good on that part. He is anemic, his thyroid is low,his potassium is low, his sodium is good and his white blood count is 9,000. Im a little upset about the thyroid as I just had his labs done last Wed and saw his endo last Thurs and nothing was said about his thyroid being low. I even point blank asked about it.
        He is on the BRAT diet due to the diarreha. Hooefully we can get it under control and his fever stays away and he can go home tomorrow morning.
        My only other concern is his eyelids are swollen and his eyes just look funny to me. The endo we are seeing here at Wolfson's contacted Chance's neuro and he told him that he wouldn't see Chance unless they could show him some kind of change that warrants his presence. And we can't get an MRI done because Chance has to be sedated and it's now the weekend. The endo said he would probably set it for an outpatient MRI so Chance didn't have to stay here until Monday. He is calling the opthalmologist to come look at Chance's eyes to make sure something isn't pressing on his optic nerves causing this change in his eyes. The only thing I didn't agree with that the endo said was that too much DDAVP can't cause fluid build up in his brain....HELLOOOOO I can find that on any medical website online :)
        Anyways,....I will write more when we know more. Thanks you guys for keeping us in your thoughts and prayers.
                                  Amy
        Mommy to Tyler (11), Kaylee (8), Spencer (7), and Chance (2, SOD, pACC, ONH, DI, Hypothryoidism,
        Growth Hormone Deficiency, Adrenal Insufficiency and the biggest blue eyes around!!)
        Chance's Website www.tknbychance.com
        Jacksonville, Florida
        http://groups.yahoo.com/group/fightingforchildsupportinfl
         
        "When there is nothing left but faith you realize faith is all you need"
         

        Having children makes you no more a parent than having a piano makes you a pianist
        Michael Levine
         
        To parents of special children, average is amazing!
      • Mark and Amy
        We saw the doctor yesterday and they said he has another ear infection or the first one didn t clear up all the way. His chest sounded fine and his throat
        Message 3 of 7 , Apr 15, 2006
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          We saw the doctor yesterday and they said he has another ear infection or the first one didn't clear up all the way. His chest sounded fine and his throat looked fine other than his enlarged tonsils. A colleague of Chance's pediatrician thinks that Chance's enlarged adenoids could be contributing to his constant congestion which could be causing all of his frequent ear infections. So I guess I made the right decision to go forth with the ENT consult regarding having them taken out. He is still sick today, coughing, fevers etc but he is on a stronger dose of antibiotics this time and they gave him a prescription for Rodac (sp? and Im too lazy to look it up, sad huh?) for his congestion and cough. It works for a little while..... His DI is all out of whack this time. I couldn't give him his morning dose of DDAVP because his diaper was barely wet this morning and he wore it for over 12 hours. So I held off and he's peed somewhat off and on all day so Im going to check his sodium level when he wakes up before I give him his dose tonight. I've been really upset lately about going into his room when he's been sleeping for a long time, Im so scared Im going to walk in there and he's not going to be breathing or something. I feel a little better now that he is in his sister's room with her. Even Mark said something today when he checked on him and I heard what I thought was Mark yelling but it was him coughing and I ran to see what was wrong with my heart in my stomach and tears in my eyes. Mark said " You're scared like I am that you are going to go in there one day and he's going to be dead." I never really worried that much about it until lately and Im not sure why it's really bothering me that much. I mean, I worried about it with my older kids but not to the point where I get this big lump in my throat and my stomach hurts everytime I go in to check on Chance. Especially when he's slept a lot longer than he usually does......
          Ok, this turned into a book and I really didnt' mean it to.......thanks for listening, well reading me, rant and whine :oP
          I hope everyone has a Happy Easter or Ostara!!!

          Amy

          Mommy to Tyler (11), Kaylee (8), Spencer (7, asthma), and Chance (2 1/2, SOD, ONH, DI, Hypothyroidism, Adrenal Insufficiency, Hypotonia, GERD, Growth hormone deficiency, SID, Dandy Walker Variant and the biggest blue eyes this side of the Mason Dixon line!) and Wife to a wonderful husband Mark 

          Chance's Website www.tknbychance.com

          "When it seems like faith is all you have that's when you realize all you need is faith."

          "Do good to those who hate you, bless those who curse you and pray for those who mistreat you."-- teachings of Jesus

           

        • Tony and Laura Warfield
          When my sons sodium levels are off espcially low he used to sleep all day and when he was up he was throwing up/ He gets very bad headaches when his level is
          Message 4 of 7 , Apr 15, 2006
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            When my sons sodium levels are off espcially low he used to sleep all day and when he was up he was throwing up/ He gets very bad headaches when his level is off or when his number is changing. Do you use the Istat machine to test his levels? I tried to get me sons endo to prescribe one but she said that they are the most acurate. Sometimes they can be off by as much as 6 points and for my son that is not good.
            Our son just had the flu, fever combo over the last two weeks. We ended up rushing him for an emergency MRI to see if he had shunt failure (intermittent throwing up, fever, confusion and loss of balance) and on top of that his sodium level shot up to 165 and we couldnt get it down. We were giving him lots of extra liquids and it kept going up. After a very long two weeks things finally got better and it did turn out it was just the flu!!! We have to rule out shunt failure first before we rule in the flu. Good luck with your son

            Mark and Amy <tknbychance@...> wrote:
            We saw the doctor yesterday and they said he has another ear infection or the first one didn't clear up all the way. His chest sounded fine and his throat looked fine other than his enlarged tonsils. A colleague of Chance's pediatrician thinks that Chance's enlarged adenoids could be contributing to his constant congestion which could be causing all of his frequent ear infections. So I guess I made the right decision to go forth with the ENT consult regarding having them taken out. He is still sick today, coughing, fevers etc but he is on a stronger dose of antibiotics this time and they gave him a prescription for Rodac (sp? and Im too lazy to look it up, sad huh?) for his congestion and cough. It works for a little while..... His DI is all out of whack this time. I couldn't give him his morning dose of DDAVP because his diaper was barely wet this morning and he wore it for over 12 hours. So I held off and he's peed somewhat off and on all day so Im going to check his sodium level when he wakes up before I give him his dose tonight. I've been really upset lately about going into his room when he's been sleeping for a long time, Im so scared Im going to walk in there and he's not going to be breathing or something. I feel a little better now that he is in his sister's room with her. Even Mark said something today when he checked on him and I heard what I thought was Mark yelling but it was him coughing and I ran to see what was wrong with my heart in my stomach and tears in my eyes. Mark said " You're scared like I am that you are going to go in there one day and he's going to be dead." I never really worried that much about it until lately and Im not sure why it's really bothering me that much. I mean, I worried about it with my older kids but not to the point where I get this big lump in my throat and my stomach hurts everytime I go in to check on Chance. Especially when he's slept a lot longer than he usually does......
            Ok, this turned into a book and I really didnt' mean it to.......thanks for listening, well reading me, rant and whine :oP
            I hope everyone has a Happy Easter or Ostara!!!
            Amy
            Mommy to Tyler (11), Kaylee (8), Spencer (7, asthma), and Chance (2 1/2, SOD, ONH, DI, Hypothyroidism, Adrenal Insufficiency, Hypotonia, GERD, Growth hormone deficiency, SID, Dandy Walker Variant and the biggest blue eyes this side of the Mason Dixon line!) and Wife to a wonderful husband Mark 
            Chance's Website www.tknbychance.com
            "When it seems like faith is all you have that's when you realize all you need is faith."
            "Do good to those who hate you, bless those who curse you and pray for those who mistreat you."-- teachings of Jesus

          • Mark and Amy
            We ve found that the Istat is very accurate. I ve tested it with the lab that we use for Chance s endo and with our local ER. It s always been right on que.
            Message 5 of 7 , Apr 15, 2006
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              We've found that the Istat is very accurate. I've tested it with the lab that we use for Chance's endo and with our local ER. It's always been right on que. You just have to make sure you use the control vials and update it when it needs to be. ER's use them as well as dr's offices. I think it's an opinion thing too, like some dr's like certain labs etc. I've had worse luck with the actual labs than we've had with the Istat!!
              Im glad it was just the flu....We are fortunate that Chance doesn't need a shunt as of yet...
              Amy
              ----- Original Message -----
              Sent: Saturday, April 15, 2006 10:36 PM
              Subject: Re: [diabetesinsipidus] Chance Update

              When my sons sodium levels are off espcially low he used to sleep all day and when he was up he was throwing up/ He gets very bad headaches when his level is off or when his number is changing. Do you use the Istat machine to test his levels? I tried to get me sons endo to prescribe one but she said that they are the most acurate. Sometimes they can be off by as much as 6 points and for my son that is not good.
              Our son just had the flu, fever combo over the last two weeks. We ended up rushing him for an emergency MRI to see if he had shunt failure (intermittent throwing up, fever, confusion and loss of balance) and on top of that his sodium level shot up to 165 and we couldnt get it down. We were giving him lots of extra liquids and it kept going up. After a very long two weeks things finally got better and it did turn out it was just the flu!!! We have to rule out shunt failure first before we rule in the flu. Good luck with your son

              Mark and Amy <tknbychance@...> wrote:
              We saw the doctor yesterday and they said he has another ear infection or the first one didn't clear up all the way. His chest sounded fine and his throat looked fine other than his enlarged tonsils. A colleague of Chance's pediatrician thinks that Chance's enlarged adenoids could be contributing to his constant congestion which could be causing all of his frequent ear infections. So I guess I made the right decision to go forth with the ENT consult regarding having them taken out. He is still sick today, coughing, fevers etc but he is on a stronger dose of antibiotics this time and they gave him a prescription for Rodac (sp? and Im too lazy to look it up, sad huh?) for his congestion and cough. It works for a little while..... His DI is all out of whack this time. I couldn't give him his morning dose of DDAVP because his diaper was barely wet this morning and he wore it for over 12 hours. So I held off and he's peed somewhat off and on all day so Im going to check his sodium level when he wakes up before I give him his dose tonight. I've been really upset lately about going into his room when he's been sleeping for a long time, Im so scared Im going to walk in there and he's not going to be breathing or something. I feel a little better now that he is in his sister's room with her. Even Mark said something today when he checked on him and I heard what I thought was Mark yelling but it was him coughing and I ran to see what was wrong with my heart in my stomach and tears in my eyes. Mark said " You're scared like I am that you are going to go in there one day and he's going to be dead." I never really worried that much about it until lately and Im not sure why it's really bothering me that much. I mean, I worried about it with my older kids but not to the point where I get this big lump in my throat and my stomach hurts everytime I go in to check on Chance. Especially when he's slept a lot longer than he usually does......
              Ok, this turned into a book and I really didnt' mean it to.......thanks for listening, well reading me, rant and whine :oP
              I hope everyone has a Happy Easter or Ostara!!!
              Amy
              Mommy to Tyler (11), Kaylee (8), Spencer (7, asthma), and Chance (2 1/2, SOD, ONH, DI, Hypothyroidism, Adrenal Insufficiency, Hypotonia, GERD, Growth hormone deficiency, SID, Dandy Walker Variant and the biggest blue eyes this side of the Mason Dixon line!) and Wife to a wonderful husband Mark 
              Chance's Website www.tknbychance.com
              "When it seems like faith is all you have that's when you realize all you need is faith."
              "Do good to those who hate you, bless those who curse you and pray for those who mistreat you."-- teachings of Jesus

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