Folk Haven

Today we took Eli to have the swallow study done. Thank you to all who prayed for Eli and this procedure. A major answer to prayer was that we were both not only allowed to stay with Eli during the procedure, but we were encouraged to. I had been so nervous that they would expect us both to step out of the room, and that we would need to try to insist otherwise.

Since his developmental screening last month Eli’s oral vocabulary has expanded to 10 words. One of those words is “Go!” and he used it many times through out the day today starting with the first waiting room where we signed in. “Go!” was always accompanied by him pointing to the last door we had walked through.

He had to drink a lot of barium to get a good contrast for the x-rays. Even though he was thirsty and hungry he was in no way interested in drinking the barium. We tried putting some in a paper coffee cup as he likes sampling the dregs of my soy chai latte whenever the opportunity presents itself. The method earned us perhaps 2 or 3 sips.

Can’t say I blame him for not wanting to drink liquid chalk. In all he drank less than 1/3 of what they wanted him to drink.

We gave him some salty potato chips in an attempt to make him thirsty.

They tried giving him a thinner solution mixed with Pedialite, but the taste was pretty bad. He drank less than 1/2 oz of that although he did want to clutch it in his hand all the while.

The x-ray process really frightened Eli. So that his bowels would work and move the barium through his digestive track, allowing for the x-rays of his small bowel, we were encouraged to take him to the cafeteria where he could relax.

He watched Baby Signing Time there for a while, but then he slipped and fell flat on his face, so that was the end of cafeteria time.

After recovering from his fall he enjoyed running down hospital corridors. I gotta say his little diapered bum was mighty cute peaking through the flapping oversized hospital gown as he ran about. 🙂

This time of exploration gave him a bit of familiarity and confidence for the great escape he attempted right before the second round of x-rays. He didn’t get too far before he was caught by Daddy.

We tried distracting him with The Foot Book, but only made it through about 5 pages.

He did enjoy commandeering the remote for the waiting room t.v. The only other person waiting there was reading her Kindle so it wasn’t a problem.

From the first set of x-rays they were able to determine that Eli’s esophagus is working fine. So nothing in this test pointed to the reason why he seems to gag so easily.

Because he had taken in so little barium, and perhaps due to how much he wiggled as well, the image quality of the second set of x-rays was not so great. Eli was shrieking and more than ready to go home when the doctor began pointing to the image on the screen and saying something about cystic fibrosis. Wha..???

I don’t know why he was going there. Perhaps the test he had done is one commonly used to indicate that disease.  I couldn’t hear him or focus on what he was saying, so after asking a clarifying question and ending up even more confused I decided we’d just wait to speak with Eli’s pediatrician (or whoever is taking over for her maternity leave). I really don’t have any reason to think that there is something to worry about here. We have never had the sort of problems with Eli that would put CF on our radar.  And I’m choosing not to obsess. (“Did he SEE something on the x-ray?”) But still, it is quite disturbing to hear a doctor casually toss about the name of a terminal illness in a discussion about your child.

Not surprisingly, Eli fell asleep on the way home. Once home he continued sleeping for a record setting 5 hour nap!

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So since his first developmental screening, here is a run down of the information we have gathered.

According to the audiologist, Eli’s hearing seems to be normal for his age. They want to test him on a yearly basis due to our family history of hearing loss.

The ophthalmologist is fairly confident that Eli’s vision is normal. His left eye may appear to be misaligned when he is focusing due to immature facial features where the folds of eyelid skin cover more of the white of the eye than they will later when he has grown more. There is even a fancy word for it … pseudostrabismus. He wants to see Eli again in 4 months, just to be certain.

He certainly looks plenty verbal!

Since his screening a month ago not only has Eli gained some oral vocabulary, but his signing has expanded to about 50 words. The insurance is requiring a second opinion so he will be having a more extensive speech screening tomorrow with a different organization and an OT evaluation there on Monday. It will be interesting what the results to those screenings will be.

Completely aside from the therapies the insurance may or may not cover, the Regional Center is offering Eli group therapy from 9 – 11 a.m. on Tuesdays and Thursdays, as well as individual speech therapy for a hour after class on Tuesdays. Add to that whatever therapy the insurance offers, or if they deny the Regional Center will offer the additional therapy, it looks like we will be very busy.

The last issue we are dealing with is that Eli has now had 2 allergic reactions (hives) after exposure to peanuts. He will be skin tested again on January 27 to see if he does indeed have a peanut allergy. In the meantime his doctor gave us a prescription for the Epi-pen to have on hand.

I’ll post another update at some point down the road.

Thank you for your interest in our sweet boy!

Karen