Skip to main content

Pestering Will Get You...

Everything!
If that is, you are talking about getting medical stuff done. If however, you are my five year old, then pestering will get you an early bedtime without supper. Isn't it unfair how grownups can do things kids aren't allowed? What is the rhyme and reason there anyway?

 Well my pestering DHMC has payed off today, after I was transferred to someone who is basically an "expediter," and "all around ruffled feathers soother," who quickly managed to slip through the sticky medical web and managed to pull up some information, finally. (But can you believe that until I started with the phone calls and messages, they didn't actually even have anything on his file about the surgery?) The DHMC patient data system is unfathomable and mysterious. Not for mere mortals!

So as of today, the date for Leo's second big cut is February 1st.
*Gulp.

And the belated results of the EEG are normal, at least normal for little man, so no need to up his Keppra dose. This is good, since I don't want to flood his little body with chemicals, but I would of course, if it meant no seizures, but it seems that his test didn't show any abnormal electricity that could lead to seizures, so all is well. Fingers crossed and all that however.

On another note, Leo is really coming into himself lately. Although he always seemed very reactive and animated to us, even when he was flat on his back last year, now that his body is catching up, he just seems to shine! He is crawling strong, pulling up to stand on great grandmaw's legs, shrieking and giggling with his sister while bouncing on the bed, throwing himself on to all fours, walking with his hands held, and exploring the whole house on his own. He eats anything and everything, although he is still on the low end of the scale. His PCP has signed him up to visit with an oral and feeding therapist, just to make sure he puts on a bit of chub for the surgery. She is pretty sure that the reason his weight has dropped off is because his mobility and activeness has shot through the roof these past months. He is just burning through all his calories without packing anything on. Lucky little bum! Wish we all had that problem. Anyway, even though I'm not too concerned, he still gets a big dollop of coconut oil or butter with all his food.

Leo is such a little love. He is definitely mama's boy, and everybody else's boy too. Every time I pick him up, he gives me these huge open mouth kisses, chuckling madly the whole time. Its awesome, although kinda in a wet and sticky way. You don't have to steal your kisses from this one.

Thanks for reading, and if you have been here since the beginning, and even if you haven't and just stumbled across us yesterday, bless you for taking a moment to catch up with our little lion man.
 And please keep him, and us, in your prayers as we go into his second major head redo!

His Trademark Flirty Look






Comments

  1. I check in every day, watching for updates and progress......we will put him on the prayer list for the 2/1 surgery...and our group of cyberspace crazy ladies will hold him in our hearts.
    Claire

    ReplyDelete
  2. Awww, the new pic at the top of your blog is so sweet. Love it. I will definitely be praying leading up to, and the day of the surgery. Let him know that some complete stranger in Colorado is praying like crazy for him. The flirty look is irresistible. I'D squeeze him. :) My third little one is such a mama's girl, way more than the other two, and I just eat it up!
    Tina

    ReplyDelete
    Replies
    1. We will be praying hard, Anna! Love hearing about how much the little lion is up to these days - he sounds like such a love. I hope we can see him soon. Lucia prays for him every night. Love to you all.
      Lydia

      Delete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...

The Heart Knows

Today during the physical therapist's visit, Leo was put through his paces. She had a whole list of things, 40 to be exact, of regular newborn motor reflexes and characteristics. Each one gets a check-mark (or not) and then a total score once she tallies up all the information that she observed. Although the final score for Leo really itself doesn't matter, the test was more to establish a baseline of development for Leo, and to find his strengths and weaknesses. Once this baseline is established, it will be easier to tell any progression and growth. Just since her last visit, she observed that Leo was doing a much better job of keeping his head in mid-line position. Before he would always keep it on one side or the other. She also determined during the exam that Leo definitely tracked her with his eyes and responded to sound. More specifically, to my voice. She had him on his tummy facing away from us, and she shook a rattle and made some noise to see if he would move his head...

Shunts Away!

Here is just a quick update for all those waiting and praying for our Leo, before we go collapse in bed for the night. Leo was prepped and ready for surgery early this morning, but they only took him around two in the afternoon. We were there with him for most of the day today, just waiting and biting our nails. The anesthesiologist, a very nice British guy, came up around lunch to talk to us about the risks etc in Leo's case. Apparently because of his tucked up little chin, the regular breathing tube could not be used without lots of maneuvering and fiber optic tools. The anesthesiologist decided to use another breathing aid that isn't normally used for babies; a little tube that only goes down into his larynx, and does not do much more then blow some air down. Most of the breathing support would have to come from Leo himself. Typically under anesthesia babies need help to breathe, so the anesthesia team takes over the breathing. However the side effect of that is the newborns...