My Hero!!!

Caleb is my Hero!. This week has been an extremely hectic week! We had a swallow study, which everyone expected him to pass with flying colors (he failed); got him fitted for ankle/foot braces and got in with a specialist w/I 48 hours; whom usually has a 4 month waiting list (which was a little discerning to me).

She ended up being wonderful and her theory makes sense of everything. I went to the apt; nervous that I would be asking lots of questions about procedures she wanted to do , as I was told to expect some more procedures and came armed with my medical binder (yes, I have a medical binder with the results of every test, x-ray etc... that Caleb has ever gotten; it has proved useful several times)

She was extremely nice and took time to answer my questions, the first of which was why is everyone freaking out over this failed swallow study when he is doing perfectly everywhere else and has achieved every developmental milestone, the answer – swallowing is a basic survival function and it does not take a lot of strength; it should be extremely easy.

After hearing Caleb’s story, other docs diagnosis and reading over some previous test and procedure notes (from my binder :) ); she decided she does not need any procedures; she knows what she feels is wrong. Caleb has motility issues down his center; from his swallowing to his emptying , this, along with the other diagnosis, indicates to her that he has a brain stem injury from delivery. My PT explained that he likely had one mild brain injury due to lack of oxygen (the mild brain injury diagnosis form neurodevelopment) which explains the low tone and why its improving and progressing so well would be it was minor, he likely had a second injury to the stem when he was pulled out by hand (as forceps and vacuum suction were missing from the delivery room!!!) which is taking longer to fix, but is actually healing rather quickly given he is doing so well, and really just has the motility/swallowing issue left.

The new doc (this is #6 and we are slated to at least consult with one more b/f we are done) is making phone calls and working on getting Caleb set up with the tools and people necessary to do a new type of therapy which is technically still in the experimental phase for pediatrics. This s GREAT news to me b/c its therapy not medicine so there are no negative side effects (except the possibility of me driving to Cincinnati Childrens once a week for therapy if she can’t figure something out here as very few people are certified, Riley does not have it and she is uncertain about Cincy, but she seems determined to find / figure out something as she has a few kids who would benefit.

So we all (me, nick, his pediatrician, therapist, aunts, grandparents etc..) entered the week thinking Caleb would pass the swallow study or at least have a significant improvement from last time and we would enter the home stretch, then Nick and I had three days of knowing something was up by the way all the professionals were acting, but not being able to figure out what as they weren’t saying much, then to today with we aren’t done yet, but they think it is fixable and as my speech and Physical therapist explained today was GOOD News.

The brain stem controls all vital functions, the heart, breathing etc…. so this explains the 300+ HR at 7 weeks (w/ crash cart waiting outside his door, I will never forget that moment) followed by the HR of 50 but…. But God saved him then and he has obviously healed the heart, and more basic functions or we wouldn’t be where we are, he wouldn’t be thriving and honestly, he wouldn’t be alive.

If all that we have left is the center; we can deal w/ that; and as the specialist told me today, she is worried but she thinks she can fix it b/c since Caleb is doing so well and somehow dealing with everything she has time to fix it;

Caleb is my hero! he is doing so well and deals with so much every day, works so hard every day but is still the happiest most active baby I know, If you would meet him for the first time (and not read my blog :)) you would honestly have no clue anything at all has happened. He’s perfect! As one therapist told me, if all babies had his will to find a way to do everything, no matter how much work it is you wonder how much better off our kids would be! He is so lucky to have a lot of people up above and down below looking out for him. He has lots of doctors and therapists, which at times is hard to manage but they all truly care about Caleb and he is one lucky boy to get the quality of care he gets, he has some of the best therapists and doctors you can get in IN and a few that are recognized throughout the country. He is our little Miracle and as my favorite quote says "The most astonishing thing about miracles....they happen" (G.K. Chesterton)