Medical Marvel

I’ve spent the last couple of months having doctors, nurses, and techs exclaim over what an odd ball I am (medically speaking, of course). They are, in particular, usually surprised by Parvo exposure with twins–the tech who often works on my ultrasounds says she’s never had a case of Parvo and twins and she’s been doing this for 19 years. My OBGYN and my Maternal-Fetal specialist have never seen it either.

Add to that my “extreme anemia,” which “almost never happens” and I’m just plain weird.

And then the other day, a nurse was exclaiming because the twins are both lying transverse instead of vertical. She tells me, “I’ve only seen that in a text book.”

I don’t tell them that I’m nothing special. Really. My oddness is a dime a dozen. The medical marvel lives at my house and hardly anyone exclaims over him–although they probably should.

This is a child they assured me was brain dead–except he wasn’t. This is a child whose only MRI report reads: “the damage is worse than expected,” and believe me, they weren’t expecting much. This is a child that a lot of people didn’t expect to be capable of much.

And here he is, recognizing his own name. He also knows “Mama” and “Daddy” and we’ve almost completely mastered “Buster” and “Max.”

and again:

And here we are beginning to use those skills to answer questions–I still have to hold out his pointer, but he does all the moving himself. Again, we’re still working on this:


 
Say what you want–I think it’s amazing.

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Comments

  1. You told me about this yesterday but I love seeing the videos. Incredible and inspirational. :)

    • I’m glad you think so, Lisa! Took a lot of different tries to get him here, but he seems to be picking things up these days!

  2. Can Charlie hold onto a stylus? They sell them for the iPad, but you have to touch the screen at a certain angle for it to register properly. They’re also really skinny. I think they’re 12.95 or so at the Apple store. It might be worth a shot.

    Amazing what their little brains can overcome:-)

    • Jennifer: Charlie could hold a stylus, but I suspect that he would refuse. I gave him a pencil once to see if he would use that, and he flatly refused (pencil doesn’t work anyway). I’m really providing more of what I would call moral support–he can mostly do the movements himself, but he prefers if you “help” him. Since he’s practically allergic to being tested, we have to “help” him or he wants to do something else.

  3. Katy, I think you are so amazing. That is phenomenal, honestly! Poor Eli, with second child syndrome, recognizes his own name but still refuses to try writing it unless I’m holding his hand, and I’m usually busy helping Addy with all the stuff SHE wants to write so I’m just waiting until he wants to before I work with him on it. And I really doubt he could recognize Mom and Dad, though maybe he does, I’ve just never checked. Still, makes me feel lazy! Must do some actual preschool work with him this summer!

    • Oh, Sarah! I have felt terrible for waiting this long to get Charlie to this point, but I really believe that he needed to be ready. I’ve taken out these cards before, but this is the first time he’s been really consistent in working with them and remembering them from day to day. Eli will get there–he’s probably like most boys and not as interested in the reading/writing thing as Addy is.

  4. Yes he is a marvel as are you, but not for your medical conditions but your spirit.

    • Nora: you really are nicer than I deserve. Just trying to do my best and falling woefully short on most days.

  5. chadwick says:

    good job, such a good mom

  6. Agree with Nora!!

    • Again, thanks, and really, you guys are too nice. You probably wouldn’t be complimenting my spirit if you could see how dirty my house is.

  7. I LOVE it! I’m a little exhausted, but that brought tears to my eyes. :)

    • Sarah, you are such a sweetie. I really am SO proud of him–I know he’s my kid and all, but this will open up so many doors for him.

      • I think it’s truly amazing how much he keeps learning all the time! Especially to see how far he’s come…I’m so glad I’ve been able to “go through it” with you over all these years.

  8. My now eleven year old, 25 week premie, grade four brain bleed little man wasn’t supposed to live either. his CAT scans and MRIs show that 45% of his brain is calcified – bone like, right? Well, good thing no one tells our kids how incapable they are.

    Kam has learned his times tables up to 12, reads a TON of words, knows phonics, recognizes and remembers all about people (what’s your mom’s name? Do you have a dog?). And has an amazing sense of humor.

    This is the child the hospital urged be cut off life support. The baby boy that continues to learn and grown and amaze. Not only in learning things, but in his intuition and sensitivity. One day a few months back, I was overwhelmed about something, and just kind of hung over his bed for awhile after tucking him in, not speaking, just kind of quietly sitting.

    He reached over and started rubbing my back, and told me, “It’s okay, mom. It’s okay.”

    Yeah. So much for tests. Great respect and all to the medical community, but they don’t have the final word. <3

    • And thank goodness for that, right? We always let Charlie guide us and so far he’s taken us much further than we ever imagined!

  9. Way to go Charlie, this is just the beginning Mama! Wait unti how motivated he will get with the twins. Cj really made great strides after Ryan started talking.

    Love proving them wrong!

    I think I might have to get Proloquo to Go! It’s Cj’s Birthday today! He received a lot of itune gift cards at his Birthday party this weekend! Charlie made up my mind, thank you!

    • Lisa: That’s exactly how we paid for Proloquo–with birthday gift cards! All those cards add up! I think we ended up spending about $20 out of pocket, which is quite a deal!

  10. I think you are BOTH amazing! How’s that? :)

    We are starting Parker on sight words too. I used to stay up at nights trying to figure out how to teach a non-verbal kid how to read.

    It’s hard work. But it’s happening!

    Keep up that amazingness that comes so naturally to you and Charlie. So many of us are inspired by it!

    • Thanks, Tammy! Really, very little of this comes naturally. I taught kids with learning disabilities for years and know that a large bank of sight words is a good place to start if you’re at-risk for that. I figure I need to give Charlie that bank to be safe. Most of the time I have no idea what I’m doing–I just keep trying stuff to see how it works.

  11. My stomach knotted when I read “brain dead”, “damage worse than expected”–the devastation, the unknown, the loss…I don’t know, so many emotions. BUT look at Charlie! He is a marvel and a miracle.

    • I know. I think those words are permanently burned in my brain. They sting less, but they are definitely still with me.

  12. Kristen says:

    Very amazing! You’re a great mom!

  13. Wow!
    Hats off to Charlie and his great teacher/mama.

  14. This is amazing. It is a testament that if you have the will nothing is difficult.

  15. From your descriptions and photos of Charlie, I’ve thought that he and my daughter, Phia, are similar in several ways, though Phia is a bit older. Using her as my benchmark, I was AMAZED at how quickly Charlie responded to your requests. He is lightening fast! Way to go, Charlie!

    • Andrea–I hate to give away all out secrets here, but for the most part, Charlie KNOWS we’re going to ask him a question, so he gets primed to answer before we even ask. If you hesitate too long, he’ll just pick something to be done with it. My FIL has actually developed this hilarious solution where he’s moving the cards around the whole time and doesn’t stop til the question is answered.

      Also, I guess, Charlie does have one pretty functional arm–he’s still considered a quad, but that arm gives him some advantages it reaching and grabbing.

  16. Kristen says:

    Now I know it isn’t the same, but my hearing impaired child at age 2 1/2 started at a Montessori school this fall with about 40 spoken words, most were so unclear even I couldn’t understand her. They taught her sounds using sandpaper letters, casually taught her words while she was exploring works, and taught her to catagorize everything (types of animals, transportation, vertibrates/invertibrates, etc). While she is still slightly behind in speech, in eight months she gained 2 1/2 years in receptive skills and 1 yr 11 mths in expressive. And low and behold, my speech-impaired daughter knows all her letter sounds and is starting to read three letter words-at three years old! A full year earlier than my older “typical” child did.
    Montessori and the wonderful teachers who work at her school have done more for my child than speech therapy ever did. Montessori might be a sensory overload for Charlie, but if you haven’t already, look into some of the materials they have. They are perfect for children who learn differently. Sandpaper letters (or felt letters if Charlie won’t tolerate the sandpaper feel) make such a nice hand/body/mind connection. Goodluck teaching him to read!

    • Kristen: I have a very good friend who is Montessori trained, and she told me all about the sand paper letters. I have made some “textured letters” with old flash cards and will be using those when we begin letter sounds. There’s actually a ton of data to support that method, which is known as “multi-sensory” and I used the multisensory approach when working with kids with reading disabilities. The Montessori method itself extends from the methods Motessori developed while working with children with disabilities.

      So, actually, you’re right on target wit that suggestion.

  17. No doubt about it, Charlie is a marvel!

  18. Way to go Charlie! Love the videos!