Week 3, Day 5 & Weekend 3 & Week 4, Day 1

Wow, I have a lot to catch up on!!!  What a busy four days with visitors, Storm Titan, and lots of low sodium cookingJ.

We had a great time with my parents here on Friday and Saturday!!  They spent the whole day at the feeding clinic with us on Friday and were both able to feed Gavin for the first time everJ.  He was so excited for them to feed him!  They did great!!!  Gavin gave them such big open mouths, and they tilted the spoon just right.  It was a huge success.  To think we came all the way to Indiana to find someone who could feed Gavin and my parents were just five miles away the whole time!  Gavin may be spending more and more time at Grandma and Grandpa’s house when we get homeJ.

 

My parents got to see the ceremonial hand off of the water before each session.  Gavin is our little water boy and needs an extreme amount of water because of his kidney condition.  His whole world revolves around his sippy cup.  He gave up his blanky a while back and now hugs his water as he falls asleep!  We are so lucky he is able to manage his water needs on his own and do not dare to interfere with his water consumption.  Eric and I will happily tube Gavin until he is ten to prevent any unnecessary time in the hospital due to NDI.  Throughout this whole feeding journey, water has been a bit of an obstacle.  The fear is that Gavin will stop drinking water as he starts eating food because he will be full after a meal.  To ensure that Gavin gets his water first, then food, he drinks about 8 ounces of water before each meal.  In the past, we have tried to incorporate water throughout the meal, but it always ends in behavioral issues around his sippy cup.  We done little experiments of providing water in other cups or squeeze bottles, but he typically refuses to drink the water during the meal unless it is in his cherished sippy cup.  This tells us that he is acting out behaviorally.  It is not the water that he wants, but the security of his sippy cup.  It has been a hard battle, and one that I still struggle with.  The only compromise that we have been able to find is to give Gavin that full cup of water just before the meal and allow him to drink as much as he wants.  Then, he tells me when he is done and we walk to the refrigerator in the kitchen and he puts the cup in a safe place on one of the shelves.  After that, he is good to go with the meal!  Once that timer goes “Beep. Beep.” we head right back to the fridge to reclaim his price cup.  It is quite a production, but this allows him to get his water first and then fill up the rest of his tummy with food.  I am happy it is working!

After a successful day at the clinic, we headed out to dinner.  Our family is not known for being adventurous when it comes to restaurants, so in Ross style, we went back to the same restaurant we had gone to the night before!  We had another great meal and glass of wineJ.  After dinner, we came back and celebrated my birthday with Lacy and her boyfriend Andrew.  They had gotten me a birthday cake and anther Willow Tree figurine.  It is so nice to have such good friends here!  We were all supper excited to see Gavin enjoy his own piece of the cake with pink frosting!!!  He was so excited when he saw us bring a plate out for him and ate almost his whole piece!!!  That third birthday is looking more and more promisingJ. 

Gavin had his first sugar rush after that…he was bouncing off the bed and walls until 11PM!!!  One of the many things I love about Gavin is how sweet and loving he is when he’s stalling to go to sleep.  After he did several laps around his big boy bed, I climbed in to lay down with him.  He laid down with me and just hugged me saying “My mommy!  My mommy!”  These little moments make all the Monster Gavin moments so worthwhile.  Gavin is such a sweet little boy.  I am one lucky mommy!!  Unfortunately, snuggling did not tame the sugar high, and Gavin continued to be super giddy.  Then, one minute he was talking and giggling and the next he was out!  Big sugar crash!  If anyone has any doubts if sugar really affects kids, I think we just proved that it does.  I’ll take a sugared up Gavin any day!

 My parents came over to The Clown House Saturday morning.  Gavin’s eating schedule is closer to an infant’s than a toddler, and it requires such a structured environment to feed him that there is not much time to get out.  By the time I clean up one meal, it is just about time to start preparing and weighing all the food for the next!  Between the first two meals, we stayed to play in the playroom at the house.  Then, after the second meal we ventured out to the park downtown again.  Gavin loved being outside and seeing other kids.  It was decent weather (50 degrees) so we wanted to take advantage of the day.  Unfortunately, Storm Titan was headed our way early the next morning, and my parents have already taken one snowy trip through the Midwest this year getting us to Indiana!  Luckily, they were able to take an early flight out of Louisville before the storm really hit and returned to the 80 degree weather back in Houston.

We were snowed and iced in on Sunday!  Luckily, Gavin has his new little friends here to play with.  He calls them his “Big Friend” and “Little Buddy”!  It is so neat to hear him laugh and play with the little boy Devin.  I love listening to their conversations!  I am amazed at how well they really play together and come up with little games.  I don’t think we would have survived this snowy day without this family!!

 I was shocked that we still had therapy today (Monday)!  Our new friends were sick with a stomach bug, so Gavin was the only kid at the clinic with the exception of one outpatient who braved the ice to come.  What good one on one treatment we received today!!  The first challenge of the day was getting to the clinic.  Our car was covered in half an inch of ice.  I have experienced snow before living back east, but this ice was quite a beast!!  We ended up waiting half an hour for a little golf cart like shuttle to take us across the huge parking lot to the clinic.  A trip that usually takes me three minutes on a bright sunny day in our car took us two minutes tops in this little cart.  The driver sped through snow patches and cut around corners…it was a little scary!  Poor Gavin was traumatized and told the story about the “scary shuttle” at least 12 times today!!!  The first story was that he cried…which he did not…but by the end of the day, he was telling me what a brave boy he was in the shuttle!  Funny how stories changeJ.  We ended up walking back after our second session instead of taking the “scary shuttle.”

The sessions went well today with the exception of the second session.  We were trying out a Chicken Pasta Primavera recipe that I had made over the weekend, and it was going great!!  Gavin didn’t shutter once with it, and he accepted it with me feeding the entire meal.  Then, in almost the last bite a rouge noodle that had not been fully pureed caught Gavin off guard, and the whole perfect meal came back up.  Poor kid.  I fed it to him again for dinner and he ate two ounces of it!  We also practiced chewing with some new foods.  I brought in two toddler dishes, one with cut up apples and the other with green beans.  Gavin practiced chewing these in the fine mesh, and it went okay.  The apples were a little juicy, so I cut up an apple tonight to bring in tomorrow and see how that goes.  I also talked to the dietitian about establishing some realistic guidelines for me to follow at home to ensure Gavin is getting all the calories he needs and a well-balanced meal.  My new goal is to work towards getting Gavin off of PediaSure.  It seems to be the biggest struggle we have in the meal, and I don’t blame him…the smell of the stuff makes me want to gag!!  I’m not sure how long that will take to reach that goal, but I’m hopeful we will get there soon!

It has become a little joke with the staff and volunteers at The Ronald McDonald House that if there is mail, it is for us!  We appreciate all of it so much!  On Friday, we got such a nice card and note from our cousins Jim and Sheri on my dad’s side.  Thank you guys…that brightened our day!  We also got a big package from my sister Kristy with a birthday present for me, tons of toys and coloring books for Gavin, and some more cookies.  Thank you Kristy, Adam, and Connor!!!!  Today, we received another card from Jim and Sheri and from our family friend Karen Fitzgerald!  Gavin loved the dogs on both of them…thank you!  I also got a birthday card from my grandmaJ.  Finally, Gavin received a package from Eric’s brother Justin, Jill, Samuel, and Calvin.  Gavin loves the little car and car sticker book…thank you!  He drove the car all around downstairs tonight!  Wow, we really are lovedJ  Thank you all for the support, love, and prayers!!!