November in a Nutshell

Girls trip to St. Louis to watch basketball, soccer and volleyball!  Hotels might be Lydia's most favorite place on earth, second only to Hy-Vee. 

Hide your candy, Lydia's coming!

Lydia, Jillian and Leah eating popcorn at Elena's soccer game.  Leah just got done playing volleyball on the league championship team for St. Cletus! 

On our way to lunch with Uncle Brian driving.  Lydia was in a big girl booster and said Uncle Brian drives too fast but giggled the entire time!

Me and Lydia at Jillian's soccer game.  

Back home and we played a lot of dominos and went shopping at Hy-Vee at the Claire's display.

Lydia, Gma and I hit up the Holiday Boutique at Arrowhead Stadium 

and all we bought was kettle corn!

November was a month of watching Lydia's appetite grow.  It was so awesome to see this after her surgery.  Apparently breathing well helps everything. :-) 

We celebrated the Holiday Season at Union Station and Dan played with his big band.  Lydia was holding on to the stomach bug until this moment and vomited all over me and her.  We rushed to the bathroom to clean up and hoped that someone would come check on us since the cell signal was gone.  Gma came to the rescue and bought Lydia a new train conductor t-shirt to wear home.  She was down for 2-3 days and then it was my turn.  Dan was able to stay healthy!

Surgery update from October 29th!

Surgery happened almost as planned on Tuesday, October 29th at 11:00am.  We received a call that morning that Dr. Arganbright was out with a fever and Dr. Nicklaus could perform the surgery.  Heck yes!  She was Lydia's ENT in the PICU before the trach.  It was nice to have someone familiar step in.  

Dr. Nicklaus performed the inferior turbinate reduction and placed a new set of ear tubes.  She performed the bronchoscopy to make sure Lydia's airway is healthy and safe and it is.  There was no need for the adenoidectomy, as her adenoids were not growing back and what is still there was not causing any obstruction.

This procedure worked like a charm!  She still mouth breaths a little but it's sinus season.  She's learning to shut her mouth more and sleep more soundly.  She has stopped getting up 3-5 times a night, is going to sleep earlier, is waking up earlier and happier, and she's also taking one short nap at preschool, not a marathon one that lasts the whole afternoon.  Her appetite has increased too.

We hoped this was an outpatient procedure but we ended up spending the night.  After surgery Lydia wouldn't let anyone talk to her, hold her or touch her but me and Dan.  They were trying to admit her to the floor and I had to kick everyone out and ask for some food for this girl.  She was hangry and downed a whole package of goldfish followed by salad, chicken nuggets, vegetables and I'm not sure how much candy.  Oh and crackers.  She packed it away and slept well that night.  This was the first time in the hospital that Lydia has eaten orally and was able to order from the room service menu.  That was a huge moment for us, or at least me. 

I'm still here, are you still reading?

I totally let the fall go by without any updates.  I traveled to Toronto for work, then had a girls week and spent a week in Boston with Mom.  Before I knew it we were in St. Louis to watch the girls play soccer, volleyball and basketball.

Lydia played soccer this fall and it was hit or miss.  Mostly miss.  Here are a few shots that would lead you to believe otherwise. 

Lydia took swimming lessons this fall and it was a hit when I was there and a total miss when anyone else took her, like grandma.  Who knows!

We made a visit to the KC Symphony for the Petite Performance and Lydia was able to play the harp and many other fun instruments. We finished the day with lots of sprinkles. 

Since Lydia was schedule for surgery just before Halloween, we got in a couple of trunk or treats the weekend before.  One day she was Elsa and the other Jessie. I am, of course, Anna and Bo Peep.  Dan is Olaf and Woody. 

The Hunger Games of Tube Weaning: UPDATE #3!

UPDATE #3:

On October 1st we stopped blending any food for Lydia and stopped feeding her through the tube entirely.  She still takes morning and nighttime liquids through her tube with her medications.  We've stopped her vitamin d and part of her iron via the tube because she eats a chewable vitamin every night.  We've also switched a med from powder dissolved in water to a chewable tablet that she eats every night.  

Lydia continues to eat her morning and afternoon snacks and lunch at preschool.  She is eating breakfast earlier each day and sometimes before the ride to school.  She's still eating and asking for a lot of vegetables, she doesn't like fruit, and she drinks only water.  Lydia asks for Ritz crackers, shredded cheese and salami at every meal.  Last night she ate 4 oreos and I loved every minute of it as much as she did. 

Lydia's weight dropped a little more and then plateaued again after a little gain.  We're on the uphill climb again, just moving very slowly.  She is currently 27.5 pounds.  30 pounds by Christmas?  It is the holidays after all!

#chdwarrior #tubie #22q11 #digeorge #hungergames #love4lydia

UPDATE #2:

On August 13th we had a check in with Dana, Lydia's dietitian.  Lydia is now eating all of her food orally except for 1 tube feeding a night after she is asleep.  She still takes liquids other than water and all medication through her gtube.

Lydia is now eating entire snacks and meals at preschool!  She's eating granola bars on the way to school and sometimes before bed.  She's found her sweet tooth and is particularly fond of mini marshmallows, mini m&ms and mini Oreos.  She eats broccoli, brussel sprouts, carrots and corn just as well as sweets.

Lydia has lost a total of 7% of her body weight and we hope it plateaus again and we don't hit 10%.

She is a rock star!

Original Post:

On July 1, 2019 we started a tube wean. Lydia is still 100% dependent on her g-tube for feedings and medicine. A tube wean means withholding 1, 2, 3 or all 4 of her tube feedings and letting her eat orally. The first week we withheld a snack, the second week a snack and lunch, and now breakfast, snack and lunch. We are only tube feeding her dinner after she's eaten dinner orally.

Lydia's oral consumption of food has gone from less than 1/8 of a teaspoon a day to at least one meal's worth of food every single day. She's learning what it means to be hungry and that eating food makes the hunger go away. She's exploring more food than ever before and is not picky.

Over the course of three weeks Lydia did lose 5% of her body weight and we will need to stop the Hunger Games if she goes beyond 10%. When she does hit 10% we will hold steady and see if she can maintain that weight for about a week before adding tube feedings back. Then she'll have to gain by eating orally and take her meds orally. She also has to go several months with absolutely zero things through the g-tube before it can be removed. She's by no means there but she has taken great strides in just three weeks.

We are so proud of her and continue to be amazed! Everything revolves around food right now so here's a bunch pictures of Lydia eating!

Surgery next week and happy days ahead.

Surgery is scheduled for Tuesday, October 29th at 11:00am.  The actual procedure is quick and she's only scheduled to be in the operating room for 2.5 hours.  Dr. Arganbright will do an adenoidectomy, inferior turbinate reduction and place a new set of ear tubes.  She'll also do a bronchoscopy to make sure Lydia's airway is healthy and safe. 

Our biggest hope is that this procedure will allow Lydia to breathe through her nose and not be a mouth breather morning, noon and night.  That will help her sleep and rest better, thus making mornings more delightful and helping her grow. 

We hoped this was an outpatient procedure and it still may be but we're packing our bags for an overnight stay.  This will be the first time in the hospital that Lydia is eating orally and will be ordering from the room service menu.  We're trying to use that as a high point.  

On to other news and photo updates!  Dan and I have both been traveling a lot since September and Lydia does not enjoy it.  She's handled it all pretty well and is definitely glad I'm home. 

Red Friday!

  

Lydia and Grandma spend most Thursday mornings at Wonderscope! 

Soccer happened this fall and it's hit or miss with Lydia.

We had a sick day or two in October but nothing a pink nightgown won't fix.

Red Friday!

Preschool Charlie Brown Church

Her School of Religion classroom has Peanuts decor.

Reading books at Kohls!

Get your flu shot. Like right now.

Lydia, just loving the last days of summer!