Swallow Study Update

Levi has been super fussy since we restarted Miralax a few days ago.  Last night he screamed for hours, and today he was crying so hard they couldn't do the swallow study.  I was so disappointed!  The speech therapist was really sweet, and she fed him a few tiny bites of food and watched how he swallowed.  He was so tired by this point that I didn't think he would even take a bite, but he finally did and Christy was pleased with what she saw.  She said we can give him one tiny snack a day, and work with him as much as possible with empty spoons, or with a little flavor on them.  We rescheduled the swallow study for March 4 early in the morning, when Levi is generally at his best.

Regarding the Miralax, I'm done with it!  I have given it every possible chance and am now throwing it out the window.  I want my happy baby back!!  I assume we'll go back to Milk of Magnesia, but won't know for sure until I talk to the GI doctor tomorrow.

Levi sitting up in a regular high chair :)

Swallow Study Today!

Today Levi has a follow up swallow study, which will determine whether or not he can start eating by mouth again.  This is a big deal for us!! Last July the swallow study showed that food and liquid pooled at the back of his throat, putting him at risk for aspiration.  It was determined that he should have nothing to eat or drink by mouth for 6 months, and of course that is why he now has the feeding tube. 

Eating had become very difficult for him at the time.  Levi had never had a big appetite, and the food on the ketogenic diet is not very tasty, although we did find some recipes he enjoyed.  Also, the diet is very strict, and all meals need to be completely consumed for it to be effective. We found ourselves constantly trying to shove food into him.  By the time one meal was finished, it was almost time for the next.  The hope is that he wasn't swallowing well because of the continuous stress of being force fed, and now that he's had a break, he will be successful once again.

 I've made him two of his favorite ketogenic meals, a bottle of dilute pedialyte, and a bottle of ketocal formula.  He will swallow barium, and then as they feed him and give him the bottle we can watch on a monitor to see how the food and liquid flows down his throat.  It's definitely an interesting experience.

If he passes the study, we will most likely just begin to give him a couple small snacks a day, and try to promote an interest in food.  It would make sense that eating by mouth may go a long way to help with the bowel issues.  Please pray with us that Levi passes the swallow study today, and can begin to have some food by mouth daily!

Ketogenic Chocolate Cream

 

Big Boy Bed

Levi (and Mommy) have reached a very important milestone.  Last night we took the crib out of our room and put it away.  Levi slept in his very own room in his big boy toddler bed all night long!  He's been taking naps in his room for quite a while.  I was the one too nervous to move him into his own room.  With the help of the Angelcare monitor we just ordered, the first night was enjoyable and stress free for both of us!  It will be nice not to tiptoe and whisper in my own room anymore. 

Life has continued to be a rollercoaster of ups and downs.  Levi's bowels were working on their own for more than a week, but now have stopped again.  The fearful crying that is reminiscent of a newborn falling has been more frequent lately as well. 

It is time for the annual meeting of all Levi's therapists, so we have been working on evaluations.  I'm pleased to report that he's gained ground in each area, despite the medical issues he's faced recently.  He seems to be at the point he was just before the G-tube surgery, when he was beginning to make bigger strides developmentally.

Specific areas that we are needing prayer at the moment: bowel issues, fearful crying (identifying the cause/creating a solution).  All other areas are running smoothly.  Thank you, Jesus, that the seizures are few and far between!!!

I saw this on facebook today and decided to share it here as well:

Don't just see my legs not running;

Don't just see my hands not working;

Don't just see my mouth not talking;

These broken pieces are not me.

 

See instead the light in my eyes;

See instead my loving soul;

See instead my thinking mind;

These inner pieces are the real me.