Special Needs

AW: My brain injured baby is walking!

We are so excited for this milestone that we were not sure would ever come.  He is doing so amazingly well.  We are still doing followups with his nephrologist and opthamalogist, but we are hopeful he will continue to do well.  Carson's neurologist has become our friend and even came to his birthday party.  We won't see her again as a patient until he is 2 for a followup MRI for "information."  In the meantime, she says she thinks he will not have any issues due to his brain injury.  I will never forget her listing the "bad prognostic signs" Carson had in the NICU and the prediction of CP and possible vision impairment, along with the prediction of his arm never growing correctly and him having pain.   So far, we have avoided all of this.  We are still amazed.  

You ladies have been such a source of support, information and inspiration.  I am so glad I have had this board to check in with during this journey of specialists and EI.  Seriously, thank you, thank you, thank you.   

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Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

Re: AW: My brain injured baby is walking!

  • imageMrs.Rose:

    We are so excited for this milestone that we were not sure would ever come.  He is doing so amazingly well.  We are still doing followups with his nephrologist and opthamalogist, but we are hopeful he will continue to do well.  Carson's neurologist has become our friend and even came to his birthday party.  We won't see her again as a patient until he is 2 for a followup MRI for "information."  In the meantime, she says she thinks he will not have any issues due to his brain injury.  I will never forget her listing the "bad prognostic signs" Carson had in the NICU and the prediction of CP and possible vision impairment, along with the prediction of his arm never growing correctly and him having pain.   So far, we have avoided all of this.  We are still amazed.  

    You ladies have been such a source of support, information and inspiration.  I am so glad I have had this board to check in with during this journey of specialists and EI.  Seriously, thank you, thank you, thank you.   

    That's amazing!  They didn't think Peyton would walk either but with aggressive and very early PT (2 months old we started) I am thankful everyday that she has made it to where she has.  

    How exciting! 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • You and your babies are amazing.  I follow your blog and think you are the most real and down to earth mama out there!  Your girls are so lucky to have you. 
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • Congrats to Carson and family! Walkin is such a huge and special milestone! My DS walked at 14 months too and I was the proudest Momma ever.
  • Awesome, congrats! DS had HIE too and is also starting to walk. Isn't it amazing? I know other people just see it as a milestone...but I think to us its so much more.
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  • I already responded to you on 12-24, but this is so exciting I want to respond again!

    I am so excited for Carson, it's amazing what babies can overcome isn't it!

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • imageMrs.Rose:
    You and your babies are amazing.  I follow your blog and think you are the most real and down to earth mama out there!  Your girls are so lucky to have you. 

    Blushes.  

    Thank you, I could really use that this morning =) 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • This is such fantastic news and I am SO thrilled for Carson and your entire family!
  • YEAH FOR WALKING!
    WAY 2 Cool 4 School


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  • We are so thrilled.  I swear, when I see him walk around I just almost can't believe it! 

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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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