Swallow Studies

Yesterday was our 3 year check up on the famous SWALLOW STUDIES for Courtney and Joshua.
Courtney went first... she sat in the chair and looked at me and said I am going to drink.. lol this kid. She always trying to sneak a drink but knows it goes the wrong way. She suppose to be NPO all drinks and food. The GI and I discuss this to a T of what we are going to do! We have allowed her to eat chucky foods and drink only twice a day of very THICK pudding like tea to swallow the 3 pills that don't come in liquid or crush form! It been 18months and she only had 2 episodes of pneumonia and it was both due to bread actually bus like hot dog and hamburger. So the deal is now light bread only because easier to chew than all that bread.
Anyway... yesterday... She failed the thick liquids and did well with the first cracker.. and aspirated the 2nd cracker. Ummm so technically, she still NPO! No change in swallow study in 3yrs kind of disappointing.

As for Mr.Joshua.. inconclusive, would NOT allow anything in his mouth. The tiny bit that was on his lip got him to gagging and almost throwing up. He sounds really wet this morning, so that tells me, the saliva was aspirated yesterday. So for now.. we will stick NPO. That is ok! He is happy!

That was our day yesterday!

Update on Joshua

We spent several hours with a neuro and they upped his meds and already seeing a difference. So far none lasting 2-3 mins and vomiting and sleeping afterwards!


Here a video of how he is progressing!



Sorry about the fast moving video... best I could do with being so excited. He been doing some minor pushing up.. but NOW full stand.. and 1/2 steps/leap.


Most time seeing Joshua right here... and he trying to look for the dogs outside. Notice his pants falling off.. :) He is such a skinny one... but that ok.. still darling!

Update on Dayton

A fe snapshots I was able to get of Dayton when he and I spent a day together! I took him to a nearby Aquarium. He loved the idea at first. As we walked on down and around... hmmm he flipped out. My heart broke at that point. I wanted to share this with just him and not Courtney and Joshua. Just and mama and Dayton time. He use to love aquariums. So now I have to find another thing for him and I to do alone.I think mabey in the summer we will try the pool. Hmmm let see as time gets near! His favorite thing to do is follow Courtney's footsteps and play with the gameboy! Thanks to a friend of mine, her daughter is selling her gameboy to us.. so now we will have 2 of them!

Update..Courtney

This picture was taken the other morning as she and Joshua were playing in our bed
Courtney seems to be doing good.. she still getting over the last bit of aspiration. We been dealing with legs cramps and knees. We are going to try to give her tums for calicum. If in a month no change... we will investagate into it more.
She is such a big sister to both boys. Try to get them in trouble as fast as she gets them out.
We are dealing with issues at dance... she getting to the point hate to 'repeat' steps over and over. I knew the day would come she would be bored. They won't move her up because the steps are complicated now. Courtney just does not like to go over it over it. We are taking it one week at a time. We are going to video the 'steps' and see if that will help her. She has 3 new dance to learn by May. I know she can do it, but wondering if she should do just one for the recital and hang out back for the other 2. Always something!