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Re: [CEREBRAL PALSY CLUB] 2 yr old dtr with spastic quad, need feeding tips (also Filipino/Hispanic)

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  • staci
    Just wanted to tell you both it sounds like you are doing a great job with you daughters. Alma I live in Texas too. We are in Northeast Texas(Greenville) I
    Message 1 of 11 , May 12, 2006
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      Just wanted to tell you both it sounds like you are doing a great job with you daughters.
      Alma I live in Texas too. We are in Northeast Texas(Greenville) I have a three year old son named Hunter who has spastic CP.


      ana ilano <ana_phl@...> wrote:
      hi alma. are you filipina? from your title it says filipino/hispanic. Anyways, i just want to share with you what i've experienced with my ate den. When she became 2 years old, she stopped feeding from bottle that's why we feed her thru syringe, the big one....its not a feeding tube. We used that to make the feeding faster becoz when we tried by spoon she eats only 3 spoons of the food. Am still afraid to feed her solid food, scared she might choke but she can chew. Maybe, if i'll have the guts, i'll try. She likes only sweets, if we give her salty or sour, she'll throw up. She doesn't like juices especially orange, she has allergy with oranges whether it for vitamins, if i gave her vitamin c, she'll vomit every food that she ate so we stop. What's her meds for seizure? Ate den took vigabitrin and epilem before, now she's seizure free for 4 or 5 years, i think...we had her eeg last march and thank God, she's seizure free but the epilem has to be given for a long
      time just to be sure, no more vigabitrin since it has side effect on the liver. She used to attend special school with swimming lesson when we were in singapore but since last year, we were expatriated here in shanghai, am still looking for a school here but according to them, they only accept locals. My ate den weighs so much, she 's 20kg, she'll trun 6 this july. Aside from spastic CP and left kidney damaged, she's perfectly okay. She likes music so much, her favorite is amazing grace, i have to sing that when i feed her or she won't open her mouth. She doesn't like cartoons but she like watching video karaoke, weird right? She still cannot walk, talk but she makes a lot of sounds, sit on her own but she likes to roll over side to side, at bedtime, she likes to sleep by side not lay flat. She's very sensitive to feelings, she knows if ur angry, she knows if u want to play. The prognosis of her neurologist says we have to wait and see what she'll do, what we can do
      for now is give them lots and lots of love, they liked to be kissed also. I don't regret having her in our life, she's an angel sent from above. Whatever is happening to your daughter, always pray for guidance, to give you strenght. Prayer and faith can move mountains. "Til next time.




      ALMA <liliocat@...> wrote:
      Hi, my name is Alma, and I have a 2 yr old dtr with spastic quad CP.
      Alana is 2 yrs old and was born at 27 weeks gestation. I had a weak
      cervix that caused her to come early. So, she was 13 weeks early and
      weighed 2.2 lbs and measured 14 in long. Alana was so sick, she had a
      bout of NEC, that led to 2 kidney failures, then sepsis.
      Consequently, she became very dependent on the ventillator due to her
      multiple arrests in the NICU. She is a miracle from God.

      We are dealing with Alana's CP and Cortical Vision Delay/Impairment,
      along with her scarred lungs, reflux, myoclonic seizures,and failure
      to thrive (underwt). Other than that, she seems like a happy,
      pleasant child. She is still 18 pounds. She does not have a gtube as
      we are leaving that as the last resort. Alana does have some
      difficulty swallowing chunkier or hard foods. She is on Pediasure
      with fiber and eats jar food and some tidbits of food like scrambled
      eggs, mashed potatoes, mashed vienna sausage, corn beef, banana, and
      just recently lactose free ice cream. She is still on the bottle and
      spoon feeds okay. We are working with her on using a sippy cup and or
      just a training cup with thick liquids like milk shakes. We add rice
      cereal to her Pediasure. She is also on Duocal. We already tried
      Periactin and Megace to help stimulate her appetite which had no
      significant effect (only loss of sleep).

      Anyone with more tips or similar experiences?

      She used to be fuss-free. Lately, she is irritable in the morning and
      at night. Her molar teeth are still coming in. Since she has been
      teething, she has been eating less. The other theory I have about her
      irritability is that her tummy hurts and it could be her seizure
      medidcation causing her to have a stomach ache, and if she gets really
      upset she will vomit her food. We will have blood work done Fri.

      Any advice?

      Alana's vision has improved and she is focusing and tracking well now.
      She receives PT and OT 2x a week each, plus Vision Therapy 1x. I
      offer her food/bottle every 2-3 hours. She cannot sit or stand with
      assistance yet. She has weak head and trunk control. Alana has
      improved with her strength in her head and trunk. Alana does not
      crawl or roll over. She will roll over rarely and just scoots around.
      She loves to laugh and listen to funny and new sounds. She seems to
      understand what we say and ask of her. She says, Dad and Ma. When
      she likes what she is eating, she will say, "It's good." When we ask
      her, "Alana, Where are you?" She will respond, "Hea" (here). When
      she sees her cat Leilani, she laughs, or when we call her cat, she
      verbalizes, too. She still babbles and her common babble is
      dagadagadaga. She understands the concept of the phone as we
      frequently call my mother, father, and sisters. We ask her if she
      wants to dance, swing, or take a bath, and she will respond with a
      "ahuh" meaning yes. It seems that she grunts alot to acknowledge what
      we are saying.

      Thanks for listening and your support.

      Truly,
      Alma
      originally from Hawaii, now residing in Texas






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    • staci
      Last night I was telling my son a story and when I tell stories it is usually random stuff that doesn t make a lot of since and I just make it up as I go. Well
      Message 2 of 11 , May 12, 2006
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        Last night I was telling my son a story and when I tell stories it is usually random stuff that doesn't make a lot of since and I just make it up as I go. Well I was telling my son who has Cp a story about a little car who wanted to go fast but couldn't because his wheels were broken...not thinking of the symbolism that could go along. My son asked me when the little car grows if his wheels will get better.
        And then I made the connection...the little car was like him. I always wondered what it would be like when Hunter asks me about his CP, and that gave me a look into the future. So I just wondered what do you all think is the best to say. What would be a good ending to the story?


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      • vince nesci
        hello everyone vince from toronto with 16 yr old spastic son staci wrote: Just wanted to tell you both it sounds like you are doing a
        Message 3 of 11 , May 18, 2006
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          hello everyone vince from toronto with 16 yr old spastic son

          staci <flygirl_82us@...> wrote: Just wanted to tell you both it sounds like you are doing a great job with you daughters.
          Alma I live in Texas too. We are in Northeast Texas(Greenville) I have a three year old son named Hunter who has spastic CP.


          ana ilano <ana_phl@...> wrote:
          hi alma. are you filipina? from your title it says filipino/hispanic. Anyways, i just want to share with you what i've experienced with my ate den. When she became 2 years old, she stopped feeding from bottle that's why we feed her thru syringe, the big one....its not a feeding tube. We used that to make the feeding faster becoz when we tried by spoon she eats only 3 spoons of the food. Am still afraid to feed her solid food, scared she might choke but she can chew. Maybe, if i'll have the guts, i'll try. She likes only sweets, if we give her salty or sour, she'll throw up. She doesn't like juices especially orange, she has allergy with oranges whether it for vitamins, if i gave her vitamin c, she'll vomit every food that she ate so we stop. What's her meds for seizure? Ate den took vigabitrin and epilem before, now she's seizure free for 4 or 5 years, i think...we had her eeg last march and thank God, she's seizure free but the epilem has to be given for a long
          time just to be sure, no more vigabitrin since it has side effect on the liver. She used to attend special school with swimming lesson when we were in singapore but since last year, we were expatriated here in shanghai, am still looking for a school here but according to them, they only accept locals. My ate den weighs so much, she 's 20kg, she'll trun 6 this july. Aside from spastic CP and left kidney damaged, she's perfectly okay. She likes music so much, her favorite is amazing grace, i have to sing that when i feed her or she won't open her mouth. She doesn't like cartoons but she like watching video karaoke, weird right? She still cannot walk, talk but she makes a lot of sounds, sit on her own but she likes to roll over side to side, at bedtime, she likes to sleep by side not lay flat. She's very sensitive to feelings, she knows if ur angry, she knows if u want to play. The prognosis of her neurologist says we have to wait and see what she'll do, what we can do
          for now is give them lots and lots of love, they liked to be kissed also. I don't regret having her in our life, she's an angel sent from above. Whatever is happening to your daughter, always pray for guidance, to give you strenght. Prayer and faith can move mountains. "Til next time.




          ALMA <liliocat@...> wrote:
          Hi, my name is Alma, and I have a 2 yr old dtr with spastic quad CP.
          Alana is 2 yrs old and was born at 27 weeks gestation. I had a weak
          cervix that caused her to come early. So, she was 13 weeks early and
          weighed 2.2 lbs and measured 14 in long. Alana was so sick, she had a
          bout of NEC, that led to 2 kidney failures, then sepsis.
          Consequently, she became very dependent on the ventillator due to her
          multiple arrests in the NICU. She is a miracle from God.

          We are dealing with Alana's CP and Cortical Vision Delay/Impairment,
          along with her scarred lungs, reflux, myoclonic seizures,and failure
          to thrive (underwt). Other than that, she seems like a happy,
          pleasant child. She is still 18 pounds. She does not have a gtube as
          we are leaving that as the last resort. Alana does have some
          difficulty swallowing chunkier or hard foods. She is on Pediasure
          with fiber and eats jar food and some tidbits of food like scrambled
          eggs, mashed potatoes, mashed vienna sausage, corn beef, banana, and
          just recently lactose free ice cream. She is still on the bottle and
          spoon feeds okay. We are working with her on using a sippy cup and or
          just a training cup with thick liquids like milk shakes. We add rice
          cereal to her Pediasure. She is also on Duocal. We already tried
          Periactin and Megace to help stimulate her appetite which had no
          significant effect (only loss of sleep).

          Anyone with more tips or similar experiences?

          She used to be fuss-free. Lately, she is irritable in the morning and
          at night. Her molar teeth are still coming in. Since she has been
          teething, she has been eating less. The other theory I have about her
          irritability is that her tummy hurts and it could be her seizure
          medidcation causing her to have a stomach ache, and if she gets really
          upset she will vomit her food. We will have blood work done Fri.

          Any advice?

          Alana's vision has improved and she is focusing and tracking well now.
          She receives PT and OT 2x a week each, plus Vision Therapy 1x. I
          offer her food/bottle every 2-3 hours. She cannot sit or stand with
          assistance yet. She has weak head and trunk control. Alana has
          improved with her strength in her head and trunk. Alana does not
          crawl or roll over. She will roll over rarely and just scoots around.
          She loves to laugh and listen to funny and new sounds. She seems to
          understand what we say and ask of her. She says, Dad and Ma. When
          she likes what she is eating, she will say, "It's good." When we ask
          her, "Alana, Where are you?" She will respond, "Hea" (here). When
          she sees her cat Leilani, she laughs, or when we call her cat, she
          verbalizes, too. She still babbles and her common babble is
          dagadagadaga. She understands the concept of the phone as we
          frequently call my mother, father, and sisters. We ask her if she
          wants to dance, swing, or take a bath, and she will respond with a
          "ahuh" meaning yes. It seems that she grunts alot to acknowledge what
          we are saying.

          Thanks for listening and your support.

          Truly,
          Alma
          originally from Hawaii, now residing in Texas






          SPONSORED LINKS
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          ---------------------------------
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          Visit your group "cerebralpalsyclub" on the web.

          To unsubscribe from this group, send an email to:
          cerebralpalsyclub-unsubscribe@yahoogroups.com

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          SPONSORED LINKS
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          ---------------------------------
          YAHOO! GROUPS LINKS


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          To unsubscribe from this group, send an email to:
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          SPONSORED LINKS
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          ---------------------------------
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          Visit your group "cerebralpalsyclub" on the web.

          To unsubscribe from this group, send an email to:
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        • staci
          Hello Vince, I have a 3 year old spastic Cp son named Hunter. I love meeting the parents with the older children so I can get some good advise and just see
          Message 4 of 11 , May 19, 2006
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            Hello Vince,
            I have a 3 year old spastic Cp son named Hunter. I love meeting the parents with the older children so I can get some good advise and just see what is ahead.
            Hunter hates stretching thats what I am working on now. He needs to do it way more often.
            Staci.

            vince nesci <cudavince@...> wrote:
            hello everyone vince from toronto with 16 yr old spastic son

            staci <flygirl_82us@...> wrote: Just wanted to tell you both it sounds like you are doing a great job with you daughters.
            Alma I live in Texas too. We are in Northeast Texas(Greenville) I have a three year old son named Hunter who has spastic CP.


            ana ilano <ana_phl@...> wrote:
            hi alma. are you filipina? from your title it says filipino/hispanic. Anyways, i just want to share with you what i've experienced with my ate den. When she became 2 years old, she stopped feeding from bottle that's why we feed her thru syringe, the big one....its not a feeding tube. We used that to make the feeding faster becoz when we tried by spoon she eats only 3 spoons of the food. Am still afraid to feed her solid food, scared she might choke but she can chew. Maybe, if i'll have the guts, i'll try. She likes only sweets, if we give her salty or sour, she'll throw up. She doesn't like juices especially orange, she has allergy with oranges whether it for vitamins, if i gave her vitamin c, she'll vomit every food that she ate so we stop. What's her meds for seizure? Ate den took vigabitrin and epilem before, now she's seizure free for 4 or 5 years, i think...we had her eeg last march and thank God, she's seizure free but the epilem has to be given for a long
            time just to be sure, no more vigabitrin since it has side effect on the liver. She used to attend special school with swimming lesson when we were in singapore but since last year, we were expatriated here in shanghai, am still looking for a school here but according to them, they only accept locals. My ate den weighs so much, she 's 20kg, she'll trun 6 this july. Aside from spastic CP and left kidney damaged, she's perfectly okay. She likes music so much, her favorite is amazing grace, i have to sing that when i feed her or she won't open her mouth. She doesn't like cartoons but she like watching video karaoke, weird right? She still cannot walk, talk but she makes a lot of sounds, sit on her own but she likes to roll over side to side, at bedtime, she likes to sleep by side not lay flat. She's very sensitive to feelings, she knows if ur angry, she knows if u want to play. The prognosis of her neurologist says we have to wait and see what she'll do, what we can do
            for now is give them lots and lots of love, they liked to be kissed also. I don't regret having her in our life, she's an angel sent from above. Whatever is happening to your daughter, always pray for guidance, to give you strenght. Prayer and faith can move mountains. "Til next time.




            ALMA <liliocat@...> wrote:
            Hi, my name is Alma, and I have a 2 yr old dtr with spastic quad CP.
            Alana is 2 yrs old and was born at 27 weeks gestation. I had a weak
            cervix that caused her to come early. So, she was 13 weeks early and
            weighed 2.2 lbs and measured 14 in long. Alana was so sick, she had a
            bout of NEC, that led to 2 kidney failures, then sepsis.
            Consequently, she became very dependent on the ventillator due to her
            multiple arrests in the NICU. She is a miracle from God.

            We are dealing with Alana's CP and Cortical Vision Delay/Impairment,
            along with her scarred lungs, reflux, myoclonic seizures,and failure
            to thrive (underwt). Other than that, she seems like a happy,
            pleasant child. She is still 18 pounds. She does not have a gtube as
            we are leaving that as the last resort. Alana does have some
            difficulty swallowing chunkier or hard foods. She is on Pediasure
            with fiber and eats jar food and some tidbits of food like scrambled
            eggs, mashed potatoes, mashed vienna sausage, corn beef, banana, and
            just recently lactose free ice cream. She is still on the bottle and
            spoon feeds okay. We are working with her on using a sippy cup and or
            just a training cup with thick liquids like milk shakes. We add rice
            cereal to her Pediasure. She is also on Duocal. We already tried
            Periactin and Megace to help stimulate her appetite which had no
            significant effect (only loss of sleep).

            Anyone with more tips or similar experiences?

            She used to be fuss-free. Lately, she is irritable in the morning and
            at night. Her molar teeth are still coming in. Since she has been
            teething, she has been eating less. The other theory I have about her
            irritability is that her tummy hurts and it could be her seizure
            medidcation causing her to have a stomach ache, and if she gets really
            upset she will vomit her food. We will have blood work done Fri.

            Any advice?

            Alana's vision has improved and she is focusing and tracking well now.
            She receives PT and OT 2x a week each, plus Vision Therapy 1x. I
            offer her food/bottle every 2-3 hours. She cannot sit or stand with
            assistance yet. She has weak head and trunk control. Alana has
            improved with her strength in her head and trunk. Alana does not
            crawl or roll over. She will roll over rarely and just scoots around.
            She loves to laugh and listen to funny and new sounds. She seems to
            understand what we say and ask of her. She says, Dad and Ma. When
            she likes what she is eating, she will say, "It's good." When we ask
            her, "Alana, Where are you?" She will respond, "Hea" (here). When
            she sees her cat Leilani, she laughs, or when we call her cat, she
            verbalizes, too. She still babbles and her common babble is
            dagadagadaga. She understands the concept of the phone as we
            frequently call my mother, father, and sisters. We ask her if she
            wants to dance, swing, or take a bath, and she will respond with a
            "ahuh" meaning yes. It seems that she grunts alot to acknowledge what
            we are saying.

            Thanks for listening and your support.

            Truly,
            Alma
            originally from Hawaii, now residing in Texas






            SPONSORED LINKS
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            ---------------------------------
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            Visit your group "cerebralpalsyclub" on the web.

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