Saturday, March 16, 2013

Hi my name is Kristin and I'm really bad at updating!! PART 1

I won't even apologize for not updating. Plus worst part is so much has happened. So this may be a multi-parter this week. So let's start from where we left off! So after the last time we "spoke" we started what I like to call the two months of craziness! Everyone's been taking turns getting sick. The end of January marked Annabella's birthday so we had a big party for her at the bowling alley and it was a huge success! She had a blast with all of her friends! She invited all of her "boyfriends" from school and was quite the 'teenager" the entire time! Wow, what am I going to do when she finally is a teenager? I'm thinking boarding school.

Bella and her two boyfriends!

Later that week we headed to Shriners to pick up Eddie's AFO's (ankle foot orthotics), which by the way are totally adorable! He immediately found his comfort zone and became much more stable with them on while he was on his feet. Obviously he has to hold to hang on but he is way less wobbly. 
Eddie's new AFO's

Then on Wednesday we headed out to Boston Children's to have Eddie's re-do of his urodynamics done.  We were pretty nervous since the last one we had done here was so traumatic for both little Eddie and myself.  Much to our surprise it was so much easier! They had way more staff on hand, an Elmo movie for Eddie to watch and it was as calm as possible.  They even were able to add an extra test that Shriners didn't have access too which was reassuring to us that we were in the right place.  The urodynamics confirmed the diagnosis of Neurogenic bladder with reflux to his right kidney, but they decided that it was a very tiny amount of reflux. This means we are back to cathing 4x a day and back on the Ditropan but at a lesser dose. Which by the way makes a huge difference as far as bladder output. With the old dosage his bladder wasn't quite right.  We are also back on the antibiotic every night forever which I'm not quite sure I'm ok with but I'm leaving it be for now. I figure let's get through all this other stuff and address it down the line. The neurological test that was also done was the most exciting part. Well the results were, if you ask big Eddie it was the most traumatizing part for him. Since the probe for the test is a large needle placed in between that "nether" region. Let's just say that big Eddie turned very pale and almost passed out. We actually had to switch places so he couldn't see. Poor daddy! Good news is little Eddie has no feeling there so he didn't feel a thing. It hurt daddy WAY more! Bad news is, little Eddie has no feeling there. As for the results, it gave the neurologist there an exact lesion level unlike the guesstimate that Shriners were able to make. It came back at S2S3 but with less damage than expected. This means that the damage goes up to S2 but that even that damage isn't so bad. If you asked me before I would have told you this too, I am with him everyday and see what he can do. These doctors are going to be surprised when he shows them! I'm not just saying this because I'm his mom and I think he can do anything (which he can) but he really can do more than they think. I've seen it!

Tomorrow I'll post part two so don't change that channel!!!!!!

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