An Update on Eli

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. ๐Ÿ™‚

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. ย 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. ย 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

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16 Comments

  1. Courtney S. said,

    January 19, 2012 at 10:45 pm

    It is great to hear it did not traumatize him too much. He is so cute! Anyways, have they considered an antacid and possibly an allergy medication? With the 2 combined it helped out Tyler’s problems SO much. Also you could start watching to see if certain foods are causing the gag reflex. It might be as simple ( I don’t say simple lightly but could not think of a better word) as a texture problem that he can’t stand. Tyler can NOT eat anything extremely mushy ie, yogurt, mashed potatoes that type of stuff. Once we figured this out we had to supplement his diet with a vitamin, but he stopped gagging. We have him on solid foods like veggies, cereal, lunch meat. He still can’t stand fruits so we give him the freeze dried kind Gerber makes. Anyways, just a thought. We love our little nephew give him hugs and kisses from Uncle Jason and Aunt Corn. If you have any questions feel free to email me. Tyler has been through sooooo many tests that we never mentioned to the family so I might be able to shed some light on things or I may not know anything…lol. Take care and we will talk to you soon sis!
    Courtney

    • January 20, 2012 at 7:32 am

      It seems like Eli gags the worst on water and his own saliva. He doesn’t like mixed textures (like sandwich meat, lettuce or tomato between the bread- but does fine with almond butter and jam). Somedays he eats alright and the next he chews up his food, spits it out and takes another bite to chew up and spit. He also gags when I try to brush his teeth, even when I am not near the parts of his mouth that where most people have a gag reflex. I suspect it is a sensory issue that hopefully the occupational therapist can help us with. As for allergy medication, anything we have tried, other than Benadryl, leaves him so wound up he practically runs out of his own skin. I don’t think he would be able to swallow any pills at this point. At what age did Tyler begin to swallow pills? I’ll give Eli you hugs and kisses as soon as he wakes up. ๐Ÿ™‚

  2. ReStitch Me said,

    January 20, 2012 at 6:32 am

    He did pretty good getting that nasty stuff down for being such a little guy. I mean, really, how do they expect a child to drink it?! I’m glad its over and hopefully you will get all the answers you need soon! Keep your chin up! ๐Ÿ™‚

    • January 20, 2012 at 7:22 am

      Thanks… I am so glad to have Thursday behind us! That stuff is hard enough to drink when you are an adult and understand why it is necessary to do so.

  3. katheen courtney said,

    January 20, 2012 at 7:18 am

    Appreciate the update and your family is in our thoughts and prayers. He is such a cutie pie!

  4. Courtney S. said,

    January 20, 2012 at 9:42 am

    Tyler started swallowing pills at 2. They put him on a medication for his hyper activity and it was a swallow or crush pill. We could not add it to anything he could eat because applesauce was the most common used to add crushed pills to and he couldn’t stand the texture. Needless to say we took him off the medicine shortly there after because it made him a zombie. We would rather never sleep then have our son on medications that make him someone he is not. He is on Singulair chewables and those help a LOT. Anyways, Tyler never gagged on water but he does gag if his foods mix as well. It is a texture disorder that specialists say he will outgrow. In the meantime I give him what I can that is healthy for him and we supplement a lot of milk the doctor told us that as long as he drinks milk he will be fine. To me, that seems like so little for a 4 year old almost 5, but he is healthy despite being small for his age. He is extremely “wired” up all the time. He does not nap at all. He gets up at 10 am and goes to bed around 2 am. When he is over tired he gets extremely wound up and mean. We have to watch him because he likes to hit the cats and upset dad. He isn’t trying to be mean as much as he wants to play “swords” and “wrestling” even though we have ban toy guns, swords, etc he still makes them out of household objects etc. but I guess boys will be boys…lol.. Keep me updated on what the therapists say and maybe they will try something that will work with Tyler as well.

    OH! I forgot. They found that when Tyler is very wired up and will not calm or listen there is something that works! You have to get your hands on a baby BRUSH not comb and use those really soft bristles ( a surgical brush works too as that is what they gave us). You have to start at the top of the arm and brush down his arm softly with the brush. You do that ten times on each arm and ten on each leg and it helps to calm them and let them get their nerves back under control. You can quietly sing his favorite songs or count bushes as you do it as well. It was a great calmer for Tyler without any harmful medications.

  5. Inder said,

    January 20, 2012 at 4:34 pm

    Oh my gosh, POOR BUNNY! That would be a really rough day for *me,* and I’m old enough to understand that I have to do some unpleasant things and they will be over soon enough. Poor Eli! But it sounds like he was a trooper, and so were you! Not fun at all. But that is great news about his esophagus! So glad it’s over, and it sounds like you’re going be juggling all kinds of help and therapy in the coming months. That’s awesome. ๐Ÿ™‚

    • January 20, 2012 at 9:19 pm

      Soon his appointments will be much more fun! They have all kinds of neat equipment at the therapy center and I think he will really enjoy his time there.

  6. Maysem said,

    January 20, 2012 at 7:23 pm

    What a long day for all three of you. It seems like you guys did well…were calm and patient. It’s not easy when it comes to the little ones; you can’t help but always worry. Stay positive! Your Eli is just too cute!! Will continue to keep him in my prayers:)

  7. randalin said,

    January 21, 2012 at 5:50 pm

    Wow – what a long day! It looks like Eli was a total trooper and the little gown is just way too cute. I’m glad you got some answers (but also a few more questions). I’m keeping this sweet boy (and his family!) in my thoughts.

    • January 21, 2012 at 7:16 pm

      Thanks, Randalin! Yea, Eli was a trooper, and it was information we needed. Glad it’s over though!

  8. korrale said,

    July 7, 2012 at 2:05 am

    James also had a swallow study done because he was gagging and choking on his food. Water seemed to be a big culprit.
    In the end it was decided that his hypo-sensitive SPD was making him seeking sensory input by over stuffing his mouth or swallowing too much liquid.
    When James starts to seek out that oral input during feeding I am able to hold him tightly, do joint compression or brushing. It gets him the stimulus he is looking for. Since we started doing that his gagging and chocking incidents have diminished.

    • July 7, 2012 at 2:56 pm

      Water has always been the biggest culprit in Eli’s case too. He’s been getting better and doesn’t gag as often anymore now. Cleaning his back teeth always makes him gag, though. Does James have that reaction?

      • korrale said,

        July 7, 2012 at 3:57 pm

        Brushing teeth are fine. But we also did a lot of work with a nuk brush to “wake up” his mouth.


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