Wednesday, May 16, 2012

Three Days of Awesome undone by...Carrots!

Sunday, 5/13/12

Happy Mother's Day! I received calls from Emma and Evan this morning.  It was so nice to speak to them, I really miss my kiddos! 

Ethan and I got ready to go to Kennedy Krieger for a day of feeding therapy, but we stopped by the kitchen before we left.  Wow! We are glad we did.  One of the RMH directors' family hosted a special Mother's Day breakfast.  They had table cloths on all the tables, plastic plates and flatware that looked like fine china, napkins folded elegantly and a delicious breakfast spread.  They also had boxes of candy and a 'Grace' necklace for each mom. Sweet!

Ethan had a great breakfast at feeding.  I can't believe how well he is doing with his meals this weekend, it's like he's a new kid.  It's so exciting!  

After breakfast we received a surprise call from Mark's Uncle Jim.  Jim and his wife Shirley live in Baltimore and are salt of the earth people.  They took us to their granddaughter's horse race one of the first weekends we were here.  Well, Jim planned a neat Mother's Day surprise for us.  He works at Oriole Park at Camden Yards and he got us tickets to the afternoon game.  We told him we'd meet him there after Ethan's lunch feed, but we needed to be back for his dinner feed.  

Last time I used the in-dash GPS near Camden Yards, it took me straight through the parking lot on a game day.  This time I was trying to get TO Camden Yards and it took me 2 blocks away! lol!  When I got to the parking lot, the game had already started, but I found that Uncle Jim had arranged to have the first handicap parking spot reserved for us so we could get in and out fast.  How nice!  Uncle Jim escorted us through the park and Ethan was presented with an Orioles jersey.  Nice.  Uncle Jim said he wanted to have our picture taken and it turned out to be a caricature!  How fun!  I took a picture of the caricature and it is now my profile picture on Facebook.

The day was beautiful and it was sooooo nice to sit in the stadium to watch the game.  I can't get over how nice people are here.  The usher was unbelievable, making sure every little thing was to our liking.  It was! The people sitting around us were very nice and the game was fun to watch.  Ethan even did the wave when it went by!  lol!  

We were sad to leave Camden Yards to go back for the dinner feeding, but Ethan did an  awesome job at dinner! Hooray!  He had three days of awesome feeds.  This was the best stretch of meals we had since we got to KKI a month ago.

When we got back to RMH, volunteers had set up a plaster handprint craft for the kids.  Ethan rarely, if ever, wants to do these, but he stirred the plaster and waited patiently for it to harden slightly so he could do his handprint.  Great job, Ethan!

Monday, 5/14/12

Today is a rainy day and we are tired.  It's harder to spend all 7 days at the hospital than I thought it would be.  It's funny how tiring it is when you have to sit around all day.  I think I'd have more energy if I was running a 5k everyday!

Ethan and I wore the Woodfield t-shirts that Denise FitzGerald sent us and we had our pictures taken in them before the breakfast feed.  Good thing.  Ethan spit a few bites of spinach at breakfast so his shirt was green shortly after the picture was taken!  Overall, Ethan did OK at the breakfast feed. (Denise, I soaked the shirt for the past two days and it looks good again!)

Ethan had speech therapy while I had a parent meeting.  There was no school today.  

Our parent meeting was on 'Preparing for Discharge'. Basically, we need to think about what we will need to feed our kids when we get home.  Do we have help at home? In school? Daycare? Who needs to be trained on the protocol? Etc.  It was an interesting sharing of ideas among the parents.  KKI will create a discharge plan with details unique to each family.

Carrots were introduced at Ethan's lunch feed today.  We tried unsuccessfully to introduce carrots at home after his last KKI stay.  Carrots went well at lunch, Ethan did great with all foods: spinach, peaches, carrots, yogurt and spaghetti & meatballs.  All are pureed.

Ethan now has 4 new pureed foods: carrots, spaghetti & meatballs, creamed spinach, and pizza. 

I'm not sure how Ethan's OT went this afternoon.  I hope they tell me if they have problems, because I rarely ever get feedback from OT, it's strange.

Dinner was a mess.  Ethan had yogurt, spinach, pizza, carrots and peaches.  They have been alternating bites of each food (quickly) and Ethan is not liking it.  He clamped his mouth shut for pizza, spit big mouthfuls of food (repeatedly).  Each time he spits the spat food  is reintroduced into the side of his mouth with a nuk brush.  Yuck.  And uncomfortable.  A nuk brush is like an infant toothbrush with nubbies instead of bristles.

Tuesday, 5/15/12

We woke up about 50 minutes late and it was rainy.  We are both tired.  Sorry God, but a sunny day would have been great for our motivation today.  This rain is doing nothing for us.

Breakfast was a spit fest. At one point he was so mad he was screaming NO and he actually pushed the feeder, like he wanted to hit her.  He's spitting all foods, even the ones he loves.

At lunchtime I got to sit in the feeding room instead of watching in the observation room.  This is harder, because you have a front row to the spitting and behaviors, and because I can't whip out my iphone and get lost in Facebook when it gets too hard to watch Ethan fight the food.  I guess it's time for me to put on my big girl panties.  I don't have an active role in the feeding, I'm just there so Ethan can get used to me in the room again in preparation for me taking over the feeding role.  

Lunch was rough to watch.  Ethan now has a male feeder, who will take over as lead when Ethan's current lead feeder leaves on Friday.  He's a good feeder, but definitely has a rougher hand than the women feeders.  Ethan's mouth has to be sore from all the reintroductions of spat food via the nuk brush.    

Dinner was also rough and very hard to watch. I will be observing from within the feeding room from now on. We are both completely wiped out.  We ran a few errands after the program, but went to bed early.  We needed it.  I'm pretty sure my brain no longer works.  I can't even seem to carry on an intelligent conversation with anyone anymore.  And I don't really want to either. Weird.

Wednesday, 5/16/12

Breakfast was very rough again and everyone is trying to figure out why Ethan has nosedived this week.  Every aspect of everything is being inspected.  It looks like I'll be administering Miralax every night to make sure all systems are 'go' for feedings.  I suspect carrots, pizza puree and the fact that we are exhausted may be more to blame, but we'll do whatever we can to turn this around.  

The feeders added 15 seconds between bites to slow the meal down.  This seemed to make lunch go much better.  I was also removed from the room so I would be in the observation room to consult with Dr. Gulotta during the feed. He reiterated the Miralax request, added no food or drinks outside of feeds during the day for the rest of the program, and asked me to fill out a poop and food log for anything that happens over night.  We are also on weekend feeds until further notice.

Then the nurse came in and told me the same thing.  They like to show that everyone is on the same page by having EVERYONE tell you the same thing. We got the same message multiple times during the day from different people. I think we have it now, thanks.

I suspect Ethan's mouth is sore from the zillion times the nuk brush was stuck in his mouth during feeds the past few days.  I got confirmation of this when Ethan completely freaked, started screaming, and flipped the table over in speech therapy when the ST started doing his nuk brush mouth exercises-the exact same technique that is used in the feeds. Yikes.  He recovered enough to kiss and lick a Teddy Graham cracker for the ST, but he wouldn't put the Teddy Graham  in his mouth.

Dinner started rough with a few spits, screaming and crying but actually ended very well.  I think Ethan pulled himself together after just a couple of bites.  It was a good meal.  Giving him extra time seems to have made a big difference.  I'm back in the observation room until Ethan gets consistent on the protocol again.  It looks like we'll get me back into the room on Monday.  

We had a lot of fun back at the Ronald McDonald House, which is good because Ethan repeatedly asks for food and I'm not allowed to give him any. Volunteers brought water guns, the good pump-em-up-and-they-spray-really-FAR ones.  Ooooo, I could see a fun watery mess coming on so I slyly stepped into the background and watched the corporate volunteers scatter like ants when the kids were unleashed with the guns. The small kids have incredibly accurate aims and absolutely no respect for volunteers in dresses and high heels.  Bwaaaahhhh!  It was hilarious!  

There was also a wonderfully fun pinata game and t-shirt decorating.  The night was gorgeous.  What a perfect night of fun!

We miss you all, see you in 3 and a half weeks....but who's counting?   

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