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. 🙂

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

While Out on the Town with Eli

My better half chased Eli around at the Town Center while waiting for me to do some Christmas shopping. They were near a trio of men sitting outside at a restaurant there… two brothers in their 50’s with their elderly father. After watching my husband do damage control while Eli attempted some rather extensive gardening in one of the large planters and rescuing the boy during a couple ill-advised patio scaling adventures the older man quipped, “It gets easier after they hit 50.”

Of great note today is that Eli began to say his own name. While my husband was changing is diaper Eli humped his chest and said “Ee-yi.” After I met up with them and was informed of this I pointed to Eli and said, “Who’s this?” “Ee-yi!” was his response.

Yep,  I’m lovin’ it!

Family Photos

I have always hated having my photo taken. Sitting in front of a camera I feel awkward and ill at ease. Over the years I’ve taken a few that would be worthy of contributing to the Awkward Family Photos website if I ever unearth them. (But do I really want those pictures of me floating around in cyberspace for the rest of time?) I have learned to just accept that at times pictures must be taken and if I really don’t like them I can choose not to look at them or share them much.

Now that we have a child there is more reason to get family photos taken with greater frequency. Last year we went to a department store studio. The pictures with me in them felt plenty cringe-worthy, so we chose one of just the photogenic Eli for the Christmas card.

Sears Photography, 2010

Sears Photography, 2010

This year my husband felt we should really use a family photo for the Christmas card, as it is no longer Eli’s first Christmas. So back we went to a department store studio. Eli has changed a lot since last year though. He is much more active, and quite wary of strangers. Not a good combination for a studio session. The stuffed bunny used by the photographer to elicit a smile brought forth tears and fright instead, and it all went downhill from there. We left without any photos to show for our efforts.

An acquaintance at church Mary Hurlbut,  is a photographer so I spoke with her about our dilemma. We made an appointment for a photo session with her using the church courtyard and alleyways in that neighborhood as a setting for the photos.

The first thing Mary did before we began was to say a simple prayer asking God to help her capture images of our family that will show us the way He sees us. What a wonderful thing to pray! I felt myself immediately relax.

We began with a few shots of me so I’d have a profile shot for this blog and for my Etsy shop.

Then we moved on to the family shots. Instead of trying to get Eli to sit nicely (which he NEVER does, even in the best of circumstances) for a carefully posed shot. She followed him around as he explored the things that caught his interest, instructing us how to jump into the frame and arrange ourselves around him.

Eli loves to play on the stairs.

Being tossed by Daddy!

Climbing on the fence.

Always on the go.

He is constantly on the move and she had her work cut out to keep up with him. Much of the time she was a bit out of breath! Instead of seeming annoyed that he can be a bit of a challenge to capture on film, she seemed to really enjoy him. What parent doesn’t like to see another person appreciating the little things about they so adore about their little one?

A hand full of stones.

Cell phones make him happy.

Hello!

The end result is a profile photo that does not feel like a necessary evil (I actually think they are some of the best photos ever taken of me), a fun photo for our Christmas card, and many other pictures that wonderfully capture our family at this stage in our son’s life. I would not hesitate to recommend Mary to anyone else in need of a photographer. She is a joy to work with, and she takes photographs that will be treasured for a lifetime.

Thanks, Mary!

Mary also has a blog where her most current post features some seriously breathtaking nature photography.

All photos in this post are by Mary Hurlbut Photography, unless otherwise attributed.

Upcycled Slippers

My recent foray back into the world of baby shoes reminded me that Eli is needing some slippers for this winter. We don’t wear shoes in the house and when he wears socks alone he slides and falls on the hardwood floors. The only thing is that my baby shoe pattern has been long outgrown, so I set about trying to figure out how to draft a new pattern for upcycled slippers his size. (When I was almost done with this project Gwen of Gwenny Penny left me a comment that just enlarging the existing baby shoe pattern has worked for her, even for her 3 year old. Who knew? (Well, Gwen for one. Thanks for letting me in on the secret!) So while life could have been easier for me in the sewing nook this week, I still think I learned a lot.)

First, I took a pair of his current shoes and traced around them, later adding 1/4 ” for seam allowance.

Next, I measured the length and the width over the top front of the shoe.

I then used these measurements to draw my next pattern piece, free hand drawing the curve of the toe.

I measured around the heel and sides to get the length of the heel piece and also measured for it’s height. These then were drawn on the freezer paper with added seam allowances.

Okay, now I ironed the sole pattern pieces to the leather and cut them out. (This came from a neighbor-discarded broken recliner a few years back.) Repeat for the lining fabric. (In this case my brother’s old sweatpants. Thanks, Kev!)

I continued to cut both outer and liner pieces out for the back and the top of the slippers using discarded jeans and a men’s plaid shirt.

The next few steps I did in a series of stolen moments while Eli was awake but distracted with other things. It seems he was not the only one distracted, I forgot to take photos as I worked. I’ll just have to briefly describe.

* Put toe liner and top piece right sides together and sew along the straight line.

* Do the same for the heel pieces.

* Fold on seam, right sides out and press.

* Top stitch along straight edge of all 4 pieces, 1/4″ from the top.

* Sew the lining fabric to the top of the sole. I used a little Heat ‘N’ Bond between them to keep them from slipping.

(Sorry for the lack of photos. If this isn’t clear feel free to contact me.)

Next I took the top piece and the sole. I lined up the middle of the toe of each and sewed from that point down each side.

I attached elastic to one end of the heel piece by sewing back and forth a few times. I folded the top over to create a casing and stitched along the edge, being careful not to catch the elastic on the inside. Then I pulled on the elastic until the heel gathered and felt like the right amount of tension to hold the slipper on the foot without being too tight. (Unfortunately using this method I have no idea how much elastic I actually used.) Then I tacked the elastic to the other side as I did the first and trimmed it.

I lined the heel up around the back of the sole with the lining facing out and sewed it onto the slipper.

I turned it right side out. It looked a bit funny to me so I folded the top part back.

I had to wait for Eli to wake up from his nap to try them on.

He was pleased! They fit with a little room for growth. In the couple of days since I made these he has asked me to put them on him several times. Once on, he doesn’t try to take them off, so they must be just fine as far as comfort is concerned.

 

Thanks for reading!