Tuesday, May 29, 2012

I'm slacking in my blog posts...motivation problem!

Tuesday,  5/22/12

Hi Friends, 

It's been a week since I updated the blog.  Sorry about that, but we have been so busy!  

All three meals today were awesome, Ethan was introduced to two new foods, Eggs & Cheese and Peas, and he did great!  We are transitioning me into the feeder role.  To do this, I need to be in the room observing for a few meals, so Ethan gets used to me there again, then I need to have a good grasp of the feeding protocol so I can start feeding him.  I received the written protocol to study and had mock training in the afternoon where I got to use the protocol on a KKI feeder.  All went well.  I was in the feeding room as observer for the lunch and dinner meals.   

Wednesday, 5/23/12

Ethan started the day crabby and we couldn't get him on the scale for weigh  -in.  He was so furious at the world that he had to be taken into an empty treatment room to scream it out. Ethan's  feeder had to take him back to triage when Ethan regained control of himself and was able to get Ethan's weight before breakfast.  It's funny how he is so stubborn for us and then will cooperate fully when a therapist steps in.  

Ethan was introduced to another new food at breakfast, French Toast.  He packed some bites and spit a bit, but recovered nicely.  The foods with breading are a little tougher for Ethan because they thicken up and get lumpy quickly.  Ethan does not like lumps in his food! I observed the breakfast meal in the room with the feeding team.

Then I met with Dr. Gulotta, Ethan's case manager.  We are getting down to the wire and need to discuss what the rest of the stay will look like.  We'll get a discharge date this Friday. Our discharge date should move forward from June 11 because we are on 7 day feeds instead of 5 days.   I mentioned that we are going to work with a doctor in Cincinnati who was trained at KKI.  Dr. Gulotta actually knows her and will call her about Ethan's case.  Cool!  

Dr. G wants Ethan to work on behaviors in the following order:
Potty Training
Self Feeding

I was surprised by this list since we've been working on feeding for over 9 years now and as a top priority for about 6 years, since Ethan's airway was fixed. The logic in this order seems to be that Ethan is getting to the point in his life where he needs to be more self sufficient.  If he is finally potty trained and can communicate, he will feel more in control and will fight less on all tasks, not just on feeding.  OK, that makes sense.  As a bonus, our life will be easier if Ethan is independently potty trained too.

I questioned the relatively low priority of self feeding since that was one of our goals when we came to the feeding program and we haven't addressed that goal yet.  We are all very nervous about making drastic changes to the protocol because it is working so well now.  Dr. G will think about how he can incorporate that goal without rocking the boat too drastically.

Lunch and Dinner feeds went well and I fed him in both meals.  I was very nervous in the feeding chair, but Ethan did awesome and it turned out to be very easy to feed him.  This new feeding protocol rocks!

At bedtime, I noticed Ethan's g-tube looked very sore.  It wasn't swollen, but it was very red and looked like an open wound around the g-tube.

Thursday, 5/24/12

Tubey was very crusty this morning with bright red blood colored crusts.  I cleaned it up thoroughly with the Hibacleans wash and Nurse Lynn took a culture to try to figure out what the infection is.  

Ethan did awesome at breakfast and I was the feeder.  I should remain the feeder until Mark gets here and has his training. 

We started Ethan's self feed at lunch.  I offered him one spoon of a preferred food.  The spoon was placed on a plate in front of him and we repeated this for 5 bites then I fed him the remainder of the foods. Ethan did OK, but wasn't too keen on this change in protocol.

Ethan had school and Speech today.  He ate 3 shapes of pretzels in ST, made popcorn and kissed, licked, and put popcorn in his mouth, but did not swallow. The Speech Therapist informed me that we will have parent ST training next week in preparation for discharge.  She also wants us to focus on involving Ethan in food preparation because she thinks that will help Ethan accept foods more easily. 

At dinner, we changed up the protocol for introducing self-feed.  This time I fed him his foods then presented him with a bowl with 1oz of a preferred food and he had to spoon feed himself, no matter how many bites it takes.  This worked out well.

Friday, 5/25/12

Tubey looked pretty good this morning with hardly any drainage.  

At breakfast, we did the same protocol as dinner last night.  This time, Ethan threw the bowl of self-feed bowl and fussed.  We gave him a replacement bowl and he was able to successfully complete the meal.

Ethan had to be dragged into school today so Ms. Rachel only got about 10 minutes of good school work time today.  He also had to be dragged into the potty, so it looks like someone is cranky today. 

Nurse Mindy checked Ethan's tubey and it looks pretty good.  A small granuloma has developed at the 9:00 position of the tube site.  We will have to keep an eye on this, if it gets too big it could impact the tube and will need steroids at that time-hopefully not, though. We can't give steroids now because they will interfere with his antibiotics and we HAVE to get rid of this dang infection.

Ethan did great at lunch and dinner feeds!  

Saturday, 5/26/12

We are still on 7 day feedings so we were at the hospital again this weekend.  Ethan did great on all feeds.  Yeah!  He is doing so much better this time in the program! 

Dad is on his way to Baltimore via Altoona and Philly.  He stopped in Altoona to allow Grandma Ray a visit with her cousin who was admitted permanently to a nursing home last weekend.  We also found out that her cousin's husband, who had been nursing her full-time for the past few years, had a massive stroke on Thursday and was sent to Pittsburgh and is in the ICU.  Please pray for their family.  They only have one son and he has to be under extreme stress to have both his parents in rough shape and at facilities in two different cities. 

Ethan's feeding issues seem trite compared to other's struggles.  My brother had surgery on Friday, my nephew is having surgery next week and several of my friends have family members with serious medical issues right now. Wow, this has been a rough week for many. 

Sunday, 5/27/12

Breakfast went great and Dad arrived right before lunch.  Ethan was so funny.  I talked to Mark when he was a couple of minutes away.  I said 'Ethan, Dad will be here in a few minutes!'.  Ethan ran over, sat in my lap and pretended to be asleep.  Every few seconds he would peek at the door then close his eyes again until Mark arrived.  It was so cute.  He was excited to see Daddy!

Lunch went great and we received a call from Uncle Jim to say he had Orioles tickets for us.  He reserved a parking spot up front and we ran to the game between the lunch and dinner feeds. It was hot and fun, thanks Uncle Jim!

Dinner went great too, Ethan is doing soooo well!

We went back to Fells Point in the evening and showed Dad our old apartment, walked on the waterfront, went to Bond Street Social for a tapas dinner, took Ethan to Thames Street Park for old times sake, and capped the evening off with a trip to Rita's for some frozen custard. Yum!

We also went out to fill the car with gas.  While we were waiting at a light, a young man raced by on a dirt bike.  He was flying up the street (in the inner city, pothole infested streets, mind you) doing a wheelie.  He was doing a wheelie for blocks on end-it was gravity-defying crazy.  I said to Mark "It's funny, I usually see about a dozen dirt bike riders together.  They are scary because they run through red lights, drive between cars in the lanes and weave in and out of traffic at high speeds.  I've seen them several times since we've been here." As if on cue, the rest of the gang drove by.  It will be amazing if any of them reach their next birthday. No helmets, no concern for safety-Yikes. 

The dirt bike riders can't hold a candle to the pedestrians here, though.  The Baltimore City pedestrians, and it's a large percentage of pedestrians, not just a select few, have no use for cross walks, traffic lights or even sidewalks for that matter.  I've had people walk in front of my car as I'm racing down a 6 lane road, walk out from behind cars as I'm driving down the street, cross in front of me even though my light is green, it's nuts. And it happens many times a day, not just once.  My commute is only 2.5 miles each way and it happens several times per day, so you can imagine the scope of the issue.  People in motorized wheelchairs even roll right out in front of cars!  Baltimore pedestrians are completely wacked.

Some of the feeding moms and I were exchanging notes on the subject of local pedestrians one day recently.  We all noticed the same thing and left the conversation shaking our heads in disbelief.  That night, I was reading the local newspaper in the RMH living room and there was an article about the pedestrian problem.  Apparently something like 30% of traffic accidents in Baltimore City involve pedestrians.  Thirty percent seems low compared to what I see on my commute!  

Monday, 5/28/12

It's Memorial Day in the hospital!  All three of Ethan's meals went great.  Mark had his first mock feeding training, and we spent a ton of time walking around the Johns Hopkins Medical Center showing dad our favorite haunts, checking out the great artwork in the new Children's Center, and comparing all the changes since the last time he was here.  KKI hosted a Memorial Day grill-out on the patio at the Johns Hopkins Medical School building, so we even had our Memorial Day party!   

Tuesday, 5/29/12

Ethan will be discharged on June 4th so we have less than one week left in the program!  All our weekend days bought us a discharge a week earlier than planned, yay!  

Nurse Lynn gave us the results of Ethan's g-tube culture.  He tested positive for miscellaneous respiratory infection.  This doesn't make sense so the test probably picked up some germs from his skin rather than from the g-tube drainage.  Weird, because he doesn't even have a cold. Back to square one on answers to the repeated g-tube infections.  We are concerned about the infections because it is very rare to have even one g-tube infection and Ethan has had three infections in nine weeks. 

Ethan had a rough start today when he melted down in the playroom and had to be dragged into the feeding room for breakfast.  Not a stellar start, but he recovered well.  It shows the protocol is working when he can come into the room in a crabby mood and still have a great feed. 

Mark was supposed to have a second mock feeding training this morning, but Ethan had a clinic appointment with the Down Syndrome specialist.  Ethan will have to increase one of his new meds and Dr. Capone gave us some good information on Ethan's next steps.  We also agreed to have Ethan's data included in Dr. Capone's research.  

One cool thing about this appointment was that we were allowed to play in the playroom with Mr. Kris.  Mr. Kris is a fun playroom supervisor who we went to see nearly everyday last time Ethan was in the feeding program. The rules changed and now Mr. Kris' playroom is only for kids with clinic appointments so we haven't seen much of Mr. Kris this visit.  (Shannon, if you read this, they redid the 801 playroom already.  The playroom bathroom is now Miss Cindy's office and there is a glass door between the playroom and the wii room. It totally changes the look of the play area, but makes it more functional for the staff.) 

Lunch and dinner feeds went great too. Dad was the feeder and he did an awesome job! 

Thanks friends, see you all in about a week!

Monday, May 21, 2012

Turtle Derby!

Thursday, 5/17/12

Ethan had a so-so breakfast feed this morning.  My suspicion that his mouth is sore from all the nuk brush food reintroductions was confirmed again when the feeders had to call the nurse into the feeding room because they found blood specs on the nuk brush. 

It was not a big deal, it is standard protocol to call the nurse if any blood is seen in the feeding room.  Ethan recovered and also had an ok speech therapy session.

Lunch and dinner feeds were awesome!

Friday, 5/18/12

Ethan had an awesome breakfast feed and we spent some time out in the therapy garden before the lunch feed.  The plan was to introduce pureed chicken nuggets at lunch, but Ethan had a rough time transitioning into the feeding room (ie. had to be dragged in screaming) so they delayed chicken nugget introduction til dinner.

After lunch, Ethan and I headed over to a courtyard at the Johns Hopkins Medical School where the 81st annual Turtle Derby was being held.  This is a fun event where sponsored turtles race and JHMS students perform between the races. There was a clown, some hip-hop dancing, singing, and a cookout.  The fun event benefits the Child Life departments at JHH and KKI.  We loved it, the weather was gorgeous and it was a lot of fun to watch the turtle derby.

When they have turtle races at SMOY fest in Cincinnati, the turtle run in lanes. Here they put all the turtles in a pen in the middle of a big bullseye.  The starter raises the pen and the first turtle to run out of the target wins. It was neat to think we were able to be part of such an historic event.

 I was worried about chicken nuggets because that was the only food introduced on our first KKI stay that Ethan completely rejected.  My worries were unfounded-Ethan did AWESOME at dinner!  He fought the chicken nuggets a little bit, but recovered nicely and swallowed the bites, yay!

As we were getting ready to leave KKI for the night, I noticed the skin around Ethan's g-tube was bright red.  A nurse and a doctor were called and another g-tube infection was confirmed.  This is his third infection at the site in the past 9 weeks.  This is a very unusual occurrence so the doctor prescribed an antibiotic and said he wanted to look into this further on Monday.  

Saturday, 5/19/12

We are on weekend feeds still so we spent the day at KKI today too.  It's kind of lonely on the weekends.  There are only a few inpatient feeding kids and Ethan is the only day treatment feeding kid who is on weekend feeds.  We spent a lot of time alone in the playroom and Ethan got antsy. 

A special thank you goes out to the security guard who got on the horn and had another guard unlock the 801 building to let us into the therapy garden to play.  It was a gorgeous afternoon and Ethan had fun playing in the fountains and running around on the lawn!  All three feeds were awesome today.  Ethan does so well on the weekends!

His tubey infection looked a little worse on Saturday night, I can't wait to find out what is causing it to become infected.

Sunday, 5/20/12

The g-tube looks about the same as last night except that a skin tag looking thing appears to be growing right at the incision.   All meals are going well and Ethan is taking the chicken nugget puree just fine.  The skin tag looking thing turned into boils which started to seep by lunchtime.  Yuck. 

I took Ethan back to Ronald McDonald House to give him another antibiotic dose.  What great timing! Volunteers were setting up an 'Everybody's Birthday Party' for the kids.  Ethan was naughty, but was able to pull it together to play Pin the Nose on Ronald and he won a deck of crazy 8 cards.  Fun!

We went back to KKI for the dinner feed and he did a great job!  I think we've rounded a bend. He is no longer fighting food like he used to.

Monday, 5/21/12

Ethan slept in a bit this morning and was very warm so I added Tylenol to his morning tubies.  I think we had 9 syringes to administer today.  Ethan does well with the tubey and syringes, but he's cranky this morning from the infection, and he's  in protection mode.  He's been walking around with one hand cupped over his tube site since Sunday afternoon. 

Breakfast went well, no spits or spoon refusals!  Speech Therapy was 50/50 today.  Ethan did well with his oral exercises, he does two rounds of nuk brushing inside his cheeks, 50 chews on each side with the chewy tube and 10-20 seconds of tug-o-war on each side using a rectangle chewy held between his back teeth. 

He did not do so well with the pretzels and Teddy Grahams.  His ST wanted him to dip the teddy and pretzels in the peanut butter then kiss, lick and bite them.  Ethan wanted nothing to do with this.  He threw a teddy into the peanut butter and wouldn't touch the teddy or the pretzels to his mouth.  He basically sat with a hand clamped over his mouth for the remainder of the ST session.  

He also had School before lunch.  His tutor reported that he worked on ABCs and Numbers with his speech device, but was distracted by the Weeble playhouse. He apparently thinks it's hilarious when the Weebles fall over.  You know, Weebles wobble, but they don't fall down!

Broccoli and Cheese puree was introduced at lunch today.  Ethan did awesome! Yeah!  We now have 6 new pureed foods:  creamed spinach, pizza, spaghetti & meatballs, chicken nuggets, carrots, and broccoli & cheese!

I met with the nurses and Dr. Levy about Ethan's tube infection today.  We aren't happy with the speed with which the antibiotics are working so Ethan got a new prescription and some new skin cleanser.  The thought is that there is an infection in a cavity under the skin that is not being wiped out by our previous antibiotics so the infection is reappearing every few weeks.  We should expect to be on antibiotics for a while this time to wipe it out completely.  The redness and swelling are down, but the place where the boils were looks very sore still and Ethan is still protecting the area.

Ethan started packing food again during his dinner feed.  His cheeks got bigger and bigger until he spit the whole mess out.  It took the feeder at least 5 large spoonfuls to get it all back into his mouth, but Ethan swallowed and continued with his feed. Whew!

We miss you all and will see you soon!

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?   

Saturday, May 12, 2012

Happy Mother's Day!

Wednesday, 5/9/12

Today is my and Mark's 17th Wedding Anniversary.  We were married in Maui on a Tuesday back in 1995.  We chose Tuesday because family lore tells it that my grandparents married on a Tuesday and they were married for over 50 years. Mark sent me a box of dark chocolates, thank you.  Sorry about the diddlysquat I got you...

Today was also the 75th anniversary of the Kennedy Krieger Institute.  There was a huge party in the lobby with cake and hundreds of lavender helium balloons. It looked so pretty and we were looking forward to the celebration.  Unfortunately, all the fluids we have been pumping into Ethan took their toll and we had to head back to Ronald McDonald House mid-day for a change of pants...Ethan's, not mine.  Our timing was also unfortunate as we stepped off the elevator into a lobby filled with hundreds of people and news crews...sans pants...again: Ethan, not me.  Whoops.  We tried to rush through the crowd to our car, but were stopped by a KKI PR person who asked politely 'wouldn't you like one of these "No Pictures Please" badges?' I guess they have their standards. lol!

Ethan is still having a rough time with the feeds, but he is improving slightly with each meal.  The feeders raised his number of bites back up to 48 at lunch today, he did well on yogurt and pudding, not so well on spinach and pizza purees.  He had school today, speech therapy where he stuck to his 'safe' foods and rejected the new shaped pretzel sticks.  The speech therapist also held a training session on Ethan's Vantage Lite speech device for his other therapists.  We will use it in all therapy sessions from now on to help improve Ethan's communication skills.

Thursday, 5/10/12

We have all come to the conclusion that Ethan eats best when completely distracted by a video, and he is only completely distracted when we change the videos frequently.  Some people save for college...we will be saving for media. I guess our goal of ditching the mealtime videos is toast.

Same old, same old on feeding:  he's OK with yogurt and pudding, has a hard time with pizza and spinach.  Ethan has developed a new feeding trick, he's no longer spitting each bite of pizza puree.  He now packs it into his cheeks until he looks like a chipmunk. Then he spits the whole glob at once. It's a lovely little time and energy saver for him.  The feeders also introduced peaches today.  Peaches are one of his regular foods, but the thought is to make him more comfortable with an 'old food' before they start any more new foods. If you're keeping score it's two new foods introduced in four weeks.  I think Ethan is a toughie, most kids seem to get two new foods their first day or two.

Ethan's primary feeder resigned today.  She's moving out of state to get married.  I wish her well, but I would love to have a dollar for every therapist Ethan has had who has quit or fired us mid-treatment.  We'd be set for life. This change should not disrupt Ethan's feeding goals as KKI switches out feeders regularly so the kids don't get too comfortable with one feeder.

We had our last parent training today.  The topic was Tangible Function Maintained Behavior aka bribes to get your kid to do what you want.  Very informative. I'm going to leave this program completely convinced that I am a pushover parent who is doing everything wrong. lol! Our big drama came as we were finishing up Ethan's dinner feeding.  My stomach started gurgling like crazy.  Dang, I heard that noise coming from Ethan's stomach last Thursday.  I knew I had to get Ethan back to RMH and secure in our room-and quick.  We grabbed our stuff and bat-out-of-helled it back to our room with no time to spare.  Ethan's bug bit me.  Yucko.  

Friday, 5/11/12

I was sick all night and called KKI in the morning to see if there was anyway I could drop Ethan off. They said YES, thank you God. I drove Ethan over to KKI,  his feeders met us at the front door, took care of him all day, introduced pureed spaghetti and meatballs, which he loved-go figure. He had an awesome day.  Thank you KKI staff!

On the way back to RMH, I stopped at RiteAid to get cleaning supplies, slept til 1pm then disinfected the whole room and washed all our bedding before I went to pick up Ethan at 4.  Thank you to the Rite Aid clerk who let me use her shopper card to get $10 off my purchase and to the sweet elderly man who wished me a 'Happy Mother's Day' as I left the store.  People are so nice here.

I felt shaky, but much better during the evening.  Have I raved about the volunteers who bring dinner every night to us at the Ronald McDonald House? Well, they rock.  Some mornings volunteers even make breakfast, it is wonderful, absolutely wonderful.  Thank you RMH volunteers.  Not only do they cook meals, but they do activities with the kids.  Tonight the folks from Kami's Jammies, a program of the Casey Cares Foundation, brought pajamas for all the kids.  They are so nice, they even brought pjs for Emma and Evan! They also helped the kids decorate mirrors for us moms for Mother's Day. Thank you volunteers!

Saturday, 5/12/12

The folks at KKI have asked Ethan to come in on weekends for feeding therapy.  We missed last weekend, but come hell or high water, we were going to make it this weekend.  It is very important to keep Ethan consistent and since he had such a great Friday, we need to make sure it continues throughout the remainder of our stay.  Ethan did awesome at all meals today, I think he only had one spit, if that, for the entire day.  That was probably the best day he's had and he ate spinach, pizza and spaghetti.  We are now up to 3 new foods, yay!

On the way back to RMH, I recognized a RMH mom walking down the street with a group of family members. I asked her if she was going to visit her kids at the hospital.  She had delivered triplets at 24 weeks last week.  Oh no!  She told me she was going to a memorial for one of the babies who died this week.  Please pray for the family, the two boys are doing well, but won't leave the hospital for about 4 more months.  Good Lord, a mom should not have to bury her baby on Mother's Day weekend.  Please, my prayer warrior friends, send up some extra prayers on their behalf.  Their pain and stress must be unbelievable.

Further down the block a young mother with her child wished me a 'Happy Mother's Day', boy, I was near tears from hearing about the lost baby, so this simple sweet greeting really touched my heart.  A big thank you to Denise FitzGerald, best neighbor ever, for the cool Woodfield t-shirts that were waiting for us at RMH!  In a matter of 5 minutes, Ethan and I experienced Elation, Sadness, Sweetness, and then Delighted Surprise.  Life sure is an emotional roller coaster!

Love and a Happy Mother's Day to you all!

Tuesday, May 8, 2012

Trip to the ER and to see Thomas!

Saturday, 5/5/12

Ethan continued to be sick over night last night and was very limp looking in the morning.  I called Mark to tell him I was taking Ethan over to the Emergency Room at Johns Hopkins just to make sure it wasn't a problem with his new tube or the new medications. 

The JHH Children's ER moved into a gorgeous new building this week. It's funny, because they were constructing this new building when we were here 3 years ago.  Even then, the exterior of the building looked essentially complete, I guess the interior and landscaping took that long to finish.  This building looks like it is about the size of the entire Cincinnati Children's Hospital main campus.  One of the moms here said it cost something like 3 billion dollars to build.  That seems like an incredible amount, but the building is awesome. 

We checked in and Ethan immediately had blood drawn, stomach x-rays taken and IV fluids started. The stomach x-rays looked good, so the problem wasn't his new tube. After his first bolus of fluids he had a urine test which showed he was dehydrated, so he got a second bolus of IV fluids.  We had to wait a while for the IV fluids to work and for the blood results.  The ER doc looked up the combination of meds and said they shouldn't have caused him to be sick. When the blood work finally came back the glucose was 35, which is extremely low.  We gave Ethan some strawberry milk and Pedialyte and retested and his result was 65, so there may have been a problem with the original test.   His bilirubins were high so those had to be retested too.  We were at the ER all day, but it was actually a nice calm day.  We sat and watched movies and Ethan perked up after all the fluids.  It was so nice to just sit and relax and see him improve.

I kept an eye on Facebook a little more than usual too.  My niece, Sarah, was married to Lamar today. Ethan and I were sad we couldn't make it back to Ohio for the wedding, but we really enjoyed seeing the pictures Aunt Shielah, Micah, and dad posted. 

Sunday, 5/6/12

Ethan was scheduled to go to KKI on Saturday and Sunday for feeding therapy.  We obviously missed Saturday, but since Ethan woke up Sunday morning and started jumping on the bed, I thought it would be good to get him back into the feeding routine.  We got dressed and headed to KKI, but they had sent the feeders home when Ethan ended up in the ER, so no feeding sessions today.

This worked out extremely well.  Ethan loves Thomas the Tank Engine.  Actually, he completely is obsessed with Thomas the Tank Engine.  We had reservations for 'A Day Out With Thomas' on Friday evening, but had to cancel because Ethan was sick.  I looked online and saw that Thomas was still at the B&O Railroad Museum, a few miles away, so we headed over.  I kept him in his stroller for most of the time, and we only spent about an hour there, but Ethan got to see Thomas, see Sir Topham Hatt, and got to pick out a train set.  We spent the rest of the day hanging out in our room at RMH playing with the train set and just relaxing. Nice!

As expected, I had a hard time getting Ethan to eat much on Sunday so I had to give him more Pedialyte through his tube.

Monday, 5/7/12

Ethan slept well last night and was easy to get ready this morning-until it was time to go, that is.  He did NOT want to leave RMH-I made him.  He did NOT want to get into the car - I made him.  He did NOT want to get out of the car-I made him.  He did NOT want to weigh in-I couldn't make him-he's way too floppy and wiggly to make him stay on the scale!

He had to be dragged into the breakfast feeding crying.  He also cried and spit the majority of bites at breakfast: sweet potatoes, pizza puree, creamed spinach puree.  He did great with vanilla yogurt, though.

This breakfast was the first time I felt like maybe I should just take Ethan back home and continue to spoon feed him his 10 pureed foods. Knowing how rough his weekend was, it was very, very hard to watch him fighting the breakfast food.   

Our morning was busy.  He had school, then Speech Therapy,  a visit to the  Therapy Garden with the playroom group, then it was time for lunch. He is slowly warming up.  

He is refusing most foods in all therapies.  Ethan is having such a rough day today that I promised I would take him out for spaghetti tonight.  Spaghetti noodles are one of Ethan's favorite foods.  No sauce, just tossed in a little olive oil.  Spaghetti noodles are the only noodle Ethan will eat, he won't touch macaroni noodles, rotini, or any other noodle.  Ethan was very excited to hear he would get spaghetti and kept nodding and saying 'Yes'.

He did a little better at lunch.  The feeders halved his meals until he's back to his old self.  This means he only has to take 24 bites instead of 48. He fussed and spit quite a bit of his lunch, but it was better, and less heartbreaking than breakfast.

Ethan didn't drink anything today so I gave him Pediasure and strawberry milk through his tube.    Mark and I fought getting the tube for so long, but now that it is in it has been a godsend.  It really takes a weight off my mind to know that I can give him fluids through the tube. 

Ethan had OT this afternoon with a different therapist and I did not get feedback on his session.  I wish OT had an observation room!

Dinner was another fight, so while he fought, I searched online for a family friendly restaurant in the Little Italy section of Baltimore.  Amicci's came up as one of the best family friendly restaurants in the area. OK, we have a plan for some fun and relaxation tonight! Hoo Ha!

I gave Ethan another tube feed before we left for the restaurant and off we went.  Little Italy is just a few miles away from KKI so it was a quick trip.  Little Italy is fairly close to Fells Point and, like the rest of Baltimore City, it has a lot of rowhouses on narrow streets. Most of the parking is on-street, so we drove around the block and found a spot.  This suburban mom really, really, really needs to learn how to parallel park!  

Amicci's was clean and neat and we put in our now-standard order to pay up front and have to-go boxes delivered right away  incase we had to make a quick getaway.  The nice waitress confirmed they had spaghetti, confirmed they would toss it with just a little olive oil and brought me a Coors NA.  Despite the no alcohol, I was glad to have my first 'beer' here.  The service was quick and it seemed like only a few minutes before our food was served.  The waitress delivered a steaming bowl of shrimp penne for me and a steaming bowl of-wth? Wide fettucini noodles?  They were so wide they looked like egg noodles. Ethan started to whimper and sign spaghetti. I questioned why this wasn't spaghetti, and the waitress said 'Oh, we don't have spaghetti here.' WTH?  I ordered spaghetti AND reconfirmed they had spaghetti.  I had already paid for our dinner, so I said, 'Ethan, we will have to go somewhere else for spaghetti', and quickly scooped my meal into a doggie bag before the meltdown started.  And start it did.  Ethan didn't understand why he didn't get his spaghetti and started to scream.  I made a quick getaway while dragging a screaming Ethan behind me.  Dang, I should have ordered a real beer.

Ethan held tight to the railings on the front porch of Amicci's, but I was able to pry his fingers off the rail and get him to the car while he screamed the whole time. Fun- not. What the heck kind of Family Friendly Italian restaurant in Little Italy doesn't serve spaghetti?  And why would the waitress say they have it, let me order it and then bring something totally different?  We ended up going to the supermarket and buying spaghetti and making it back at the Ronald McDonald House.  Bummer, but Ethan ate a big bowl, so the end result was good. My pasta was cold, but it was still tasty.

Tuesday, 5/8/12

Feeds were a little bit better today.  Ethan had OT and school while the moms attended parent training.  The KKI pediatric feeding disorder program is extremely good and attracts families from all over the United States and world.  Without divulging any private info, I can tell you that there are families from the Philippines, South Africa, Haiti (I think or perhaps Jamaica) as well as from Maryland.  In the past 3 weeks, families from New Jersey, Upstate New York and Arizona graduated from the feeding program. So there is quite a bit of diversity here.  

During today's parent training, which discussed Escape behaviors, one of the moms started talking about how tough it is to be a special needs mom because the parents of typical kids just don't get it.  She's having trouble with a neighbor who keeps reporting them  because her child is loud at night. Wow, within a couple of minutes we were all tearing up.  No matter what our background, special needs moms can relate.  It was a nice bonding session across cultures. Special needs parents are amazing.

Take care, we'll see you all when we get home!

Friday, May 4, 2012

More Feeding Fun!

Wednesday,  5/2/12 

Ethan slept a little later today and wanted to take a bath before we left so we skipped his breakfast drink at RMH.  When we got to KKI, Ethan wanted to walk around the feeding floor pulling a wagon.  We did about 10 laps before it was time for his breakfast feed. 

Ethan has trouble with the breakfast feed every day.  I have no idea why.  He had trouble with the sweet potatoes and the creamed spinach, so he had his eyes and arms blocked repeatedly during these two foods. The pudding and yogurt went well. 

During the breakfast feed, Erica the OT came into the feeding observation room to give me an update on OT progress.  (There is a feeding observation room where I can watch Ethan and the feeders through a one way mirror without Ethan knowing anyone is there.)  Erica reported that Ethan cut a piece of real pizza with a knife and put small pieces into his mouth and chewed a few times before taking the pizza out of his mouth and putting it back on the tray.  This is huge! Yay!

Speech Therapy went great.  Ethan ate a banana, 3 types of pretzels and drank water from a cutout cup. He ate small stick pretzels, dipping stick pretzels and square pretzels.  He also used his Vantage Lite speech device to make requests during the session.  He is finally showing interest in using the speech device so his therapists will start using the device in all sessions (except feeding) starting next week. I thought for sure Ethan and the ST heard  me when I exclaimed 'No Way!' in the observation room when Ethan ate the dipping stick and square pretzels!

The feeders decided to phase out the bubble reward at lunch.  This makes the meal go much faster. He took 48 bites alternating the preferred foods with 4 bites of creamed spinach: yogurt, creamed spinach, sweet potatoes, creamed spinach, chocolate pudding, creamed spinach.  He did great with everything. After lunch, Ethan had a HUMUNGO meltdown in the playroom.  There are strict behavior rules while the kids play in the playroom.  This reinforces good behavior and lets the kids know the KKI staff is in charge.  One rule is that a child plays with one toy and must put the toy away before moving onto the next.  Normally, Ethan is great with cleanup.  Today, however, was different.  He got out the train set with its zillion pieces, played with it and moved on to another toy. When he was prompted to clean up the train, he freaked.  He screamed, kicked and fought the staff's attempts to hand over hand cleanup for about 15 minutes. It was ugly.  

He had to be dragged in to school with Ms. Rachel.

Pizza puree was introduced at dinner. Just to remind you, Ethan generally eats a few pureed foods, some crunchy, easily dissolvable crackers, and banana.  He gets to play with real pizza in OT, but has never successfully eaten it.  So the introduction of new foods in the feeding room are all purees.

He did great with pudding, spit his first bite of pizza so he had to go through the eye covering, reintroduction of the spat pizza using a nuk brush in the side of his mouth.  He gagged, but swallowed the second bite. Yay. He did great with sweet potatoes, has some trouble with the next round of pizza puree and spinach puree.  It was hard to watch because he started falling apart and  screaming "No more" and "right there" while pointing to the door.  He finally took one more 'easy' bite of pizza puree.  During this feed, we had the most staff involved so far-five.  We had a person to block arms, one for eyes, a feeder and two data takers.  We ended the day with Ethan fairly solid on spinach puree and with a few bites of pizza puree under his belt. He gags on these foods, but is able to swallow them.  That means the feeding protocol is working!

Thursday, 5/3/12

We had a good morning, walked many laps of the second floor with the wagon and Ethan had nothing to eat or drink before his breakfast feed.   During the breakfast feed, a visiting ST and OT observed his feed with me so I had to field some questions and didn't pay as close attention to the feed. He started out his feed spitting pudding, his most preferred food, he went on to spit sweet potatoes, spinach, and pizza and then seemed to settle down.  Yogurt went great.

Ethan reportedly did well in school and speech therapy. 

We had our second parent training session this morning where we discussed Triggers for Problem Behaviors.  It was very informative, but I can't see easily putting some of the ideas into practice in real life.  Keeping an ABC chart of antecedents, behavior and consequence seems like it would be a little tough to do on the fly as Ethan has behavior issues.  I'd always be charting things after the fact. We'll see though.    

Lunch went very well.  The feeders decided to keep the Thomas video on during the entire meal, even if Ethan spits.  Previously they turned the video off each time he spit. The feeders alternated preferred foods with 2 bites of pizza.  Pureed cream of spinach is now treated as a regular food.  He spit the first two introductions of pizza, but did great with the last two pizza introductions. 

Ethan cutup and put toast pieces into his mouth in OT, but he wasn't a big fan.  He freaked a bit with all the crumbs in his mouth, but he swallowed some crumbs!

We had an appointment in the GI clinic to replace his gtube today.  Gtube to gtube replacement is a quick and easy procedure which can be done in office.  The staff was nervous about Ethan because he is highly defensive about his gtube area and he is one heck of a strong fighter.  I guess he is defensive  because of the two bouts of cellulitis and because he has to constantly push his current gtube back in because it is very heavy and pulls itself out several times per day.  We decided we would try to replace it in office, but if Ethan fought too much he would have to have the procedure under sedation.  All went well in the office and his gtube was swapped with a surface level button, or mickey.  This device looks like the valve on a beach ball and I attach a tube to it for feeding.  He did awesome and the nurse rewarded him with a Candy Land game which he proudly carried around the rest of the afternoon.

Ethan did a great job at dinner!  He was a little distracted because he saw extra Thomas DVD cases behind the dvd player and wanted the feeders to change the DVD during his meal...this was not part of the protocol, so the feeders just ignored him.  The persistent little bugger kept trying to 'tell' them throughout the entire meal with pointing and 'right there's. They fed him foods in turn this meal instead of introducing pizza between the other foods. He did great on pudding, coughed and gagged on pizza, but did swallow it, tried to distract the feeders by taking his arm out of his shirt sleeve during spinach, but he swallowed it, and he did great with yogurt.  Yay!

Our evening was planned to be laundry night, but fate has a way of throwing a wrench in our plans lately.  I sorted my laundry in the morning, so I thought I would be able to put my laundry right into the three washers and dryers in the RMH laundry room when we got back to RMH from KKI.  

There were electricians finishing up work in the hallway between our room and the laundry room when we got home.  I grabbed my laundry and put in three loads of sheets we'd need for sleeping tonight.  So far, so good, the laundry was started and I made a mental note to come back in 40 minutes to change the loads.   Within a few minutes the fire alarms started going off and the elevator broke. Shoot.  It looked like something the electricians did might have caused issues.  The firemen responded and we evacuated.  No fire was found, so we were ok to go back up to our rooms.  Unfortunately for my laundry plans, two of the three washers had blown a circuit and my sheets were not done, just simmering in a pot of dirty washer water. lovely.  They reset the circuit and the washers restarted, but never finished. The washers kept blowing a circuit and the fire alarms kept going off and the firemen kept responding.  When the fire alarm drama was over, I ended up pulling the items out of the vats of water and washing them in the one remaining washer.  I started my laundry at 4:30 and finally finished and got the beds made by 8pm.  In the meantime I got Ethan ready for bed, administered his new medicine through his new gtube, and when the beds were made, I put him in bed.  Within minutes the insanity started.  No, not the fire alarms this time...

Ethan started couging, then gurgling, then moaning, then puking all over the clean sheets.  Did I mention it took me from 4:30 to 8pm to wash them?  My first thought was that he had a reaction to his new medicine and he just upchucked his dose along  with his purees from his dinner feed.  During the course of the night, and more loads of laundry, Ethan puked every hour from 8pm to 5am. I was freaking out because I wasn't sure whether he was having a reaction to the meds or had a bug.  Each time he threw up he screamed loudly like he was in pain and fought to get away so the catch bucket didn't really work.  The elevator was still out of order and I was trying to figure out how I would get 60 pound Ethan and his stroller down 3 flights of stairs and down the block to the car in the middle of the night in a scary neighborhood to get him to the JHH emergency room.  (Yeah, I wasn't thinking straight...lack of sleep, you know....ambulance anyone?)  He finally settled down around 5am, so I took a nap and we didn't go to the emergency room after all.

Friday, 5/4/12

At 8am I called over to KKI to get advice from one of his nurses.  Both of Ethan's nurses were off for the day, so I left a message for his feeders that he wouldn't be in today.  I explained the situation to his feeder when she called me back and she referred me to the backup nurse.  Ethan is scheduled for full days at KKI on Saturday and Sunday this weekend, but Ethan has to be symptom free to return to KKI.

The nurse and the doctor decided it couldn't be the new med, so I just  needed to give him Tylenol and Pedialyte.  I administered Pedialyte each hour through his new gtube while Ethan lounged in bed.  He perked up a little bit, but he refused food and drinks by mouth until I managed to get a banana into him around 6pm. Said banana made a return engagement by 7:30 so it looks like we will miss KKI on Saturday. The verdict is still out on Sunday.  I'm starting to wonder if it is more than a coincidence that he has not been able to keep any solid food down since he got his new gtube.  I hope it's just a bug.

Tuesday, May 1, 2012

Happy May Day!

Sunday, 4/29/12

This morning we planned to go out to the horse races with Mark's Uncle Jim and Aunt Shirley so Ethan needed a bath. Our room in the Ronald McDonald House is similar to a hotel room, but the bathroom is rather small.  The floor space is only about 2 feet by 3 feet with the toilet facing the sink with the door between them and the bathtub directly across from the door. Think powder room with a tub.  I filled the bathtub, stripped Ethan down and sat him on the potty.  He's at the stage where he wants his privacy, so I stepped out of the bathroom...all of two steps away.  

As quick as a wink, Ethan hopped off the potty, pulled the door shut and locked it!  Then he hopped in the full tub. Man, that kid moves fast! I asked Ethan to open the door (repeatedly) and I knocked to see if he would answer. No luck, so I  grabbed a Q-tip from the desk, broke it in half and tried to pop the lock, but because the doorknob is commercial grade, it had a different lock mechanism and the Q-tip wouldn't work. I tried a butter knife, but couldn't get that to work either.  I could hear Ethan in the tub, and I thought he would be fine, so I ran to the kitchen to ask if anyone knew how to get the door unlocked from the outside, they didn't, so I grabbed a few kitchen utensils and ran back and tried those too. No luck. I still heard Ethan splashing in the tub and I asked him again, to open the door...no luck.  I was getting really worried by this time so I ran down to the first floor and asked the house mom.  She said no one had ever done that before, so she didn't know to open it, but she grabbed her key ring and came up.  She tried every key while I re-tried the butter knife.  The combination of the two seemed to work and the door finally popped open. Whew! 

I thanked the house mom, who said that had never happened at the RMH before, (I can't believe that), and finished Ethan's bath.  Mr. Swimmy loves his bath!  When I helped him out of the tub to the mat, he said 'Uh Oh' and peed all over the bathmat. I guess Ethan was done with the bath, thank you very much!

The horse race outing with Jim and Shirley was very nice. It was held at Shawan Downs, outside of Baltimore. Shawan Downs is a beautiful, large farm on situated on a country hillside. It was a gorgeous day and the kids were adorable on their miniature ponies in their jockey silks. Jim and Shirley's granddaughter, Sophie, who is 6, came in 3rd in her race.

Monday, 4/30/12

Ethan had a rough night last night.  Shortly after going to bed he sat up and did his 're-swallowing' thing.  Sometimes Ethan wakes up in the middle of the night, sits up in bed and it sounds like he is swallowing over and over and over again. We can also hear his stomach gurgling when this happens.  We think this is acid reflux and he takes an antacid daily. During this episode, Ethan signed for a drink. We're not allowed to have any food or drinks in our rooms at RMH, so I filled an empty sippy cup with water and gave it to him.  He drank the whole thing!  This is significant because he doesn't usually drink water, only pink or chocolate milk.  His KKI Speech Therapist has been working on water, but usually only an ounce a session.  The sippy cup probably had 6-8 ounces and he drank it all, yay!  Ethan tossed and turned the rest of the night, not so yay.

By Monday morning, he was crabby and didn't want to go to KKI. He didn't want to step in the scale in triage, and he didn't want to go into the feeding room.  

Breakfast was a fiasco. Ethan fought and spit on every bite of the meal.  He screamed those dreadful primal screams and they used a blocker to block his arms during the meal. 

At 10:30, we went out to the Therapy Garden and had fun kicking a ball and playing for about an hour. 

Ethan drank water and ate a tiny stick pretzel (a preferred food) in Speech Therapy.  He licked and 'kissed' a square pretzel, but wouldn't take a bite.  All in all it was a good ST session.  In case you're wondering why he licked and kissed a pretzel, those are the steps to getting him to take a bite.  He has to touch the food, pick it up, kiss it, lick it then stick it in his mouth and take a bite. Apparently he's ready to date the square pretzel, but not make a commitment.

Lunch went great, I think he was hungry and worn out from the breakfast fight. 

At noon we had an all team meeting where each area (Behavior Psychology, Nursing, Nutrition, Feeding, OT, and ST) presented their status on Ethan.  It was decided that Ethan will now start Breakfast 15 minutes later each day so he can have more time to relax before we begin our day.  We will also need to come in this weekend for feedings so we'll be at the hospital all day for at least 12 days in a row.  He will be introduced to a new food on Tuesday. It will be creamed spinach, which is close in taste to the spinach souffle he takes now.  I also need to get more fluids in him, because he's low. 

My assignment is to think of ways to get Ethan to do what we want him to do instead of thinking of why he does what he does. This is going to be a mindset change for me because I'm always trying to figure out why he does what he does. Dang, I wish he could talk.  We also need to challenge him more. Ethan is capable of doing way more than he currently does. True that!

I gave him fluids via tube after the meeting. He got 6ounces and threw up 2 ounces.  Oh well, at least we were on the plus side.

Dinner was awesome.  He took all bites and proactively said 'Ah' after bites! Saying 'Ah' is part of the process, he takes a bite, swallows, then the feeder says 'Good Job taking your bite.  Show me' and Ethan has to say 'Ah' and open his mouth to show her that he swallowed.

Tuesday, 5/1/12

Our morning routine was so calm!  We had a great night's sleep, great cooperation in getting ready and to KKI, he weighed in great, he played in the playroom great, but when the feeders came to get him for breakfast, the whole picture changed. 

Ethan had to be dragged in to the feeding room for breakfast, he screamed, fought and spit the entire meal and he even slapped the feeder in the face when the blocker missed his swing by a millisecond. These were not new foods, they were his preferred foods.  I have no idea what set him off and neither does the feeding team.  

Ethan started school at KKI today and I started parent training.  We discussed the 'Whys of Behavior' in parent training.   

Lunch included a few changes.  The protocol changed to include facial blocking when Ethan spits. There are two blockers behind him now, one to block hits and keep him from injuring himself during the meal, and the new blocker, who will cover Ethan's eyes for 30 seconds each time he spits.  A NEW FOOD was introduced as well!  Finally! Ethan will have to eat 2 bites of creamed spinach after each round of his preferred foods. I think total bites for the meal is 48. Dr. Gulotta came in to observe the meal and Ethan did WAY, WAY BETTER than I expected.  He took a total of 2 and a half bites of the creamed spinach and we could tell he was working to swallow them.  He gagged a bit and spit at first, but he looked like he was trying.  I guess that facial blocking worked. I was soooo excited!     

Ethan had OT after lunch and he did not want to go, he wanted to continue to pull a wagon around the hallway.  We did about 10 laps of the second floor hallway before we went down for OT, but I guess Ethan wasn't done yet.

The plan for dinner is to increase the number of bites of spinach to 3 between each of his preferred foods.  The total number of bites will remain at 48. Ethan ate 9 more bites of the creamed spinach.  He gagged a few times, but got it down!  Yay!  That's a total of 11.5 bites of a new food on the first day, an Ethan O'Brien record!

We also found out today that Ethan will be swapped from his bulky g-tube to a button on Thursday afternoon in the GI clinic. 

We had a showdown when we got back to the Ronald McDonald House.  Ethan was mad that I put him in his stroller to cross the street after he refused to hold my hand.  When we got to the RMH ramp, he grabbed onto the railing and tipped his stroller.  He held tight for about 15 minutes and hollered at me before we were able to go into the house.  People are so nice here, I had at least 3 different people stop to ask if they could help while Ethan was having his little fit outside. Sweet.

The rest of the night has been calm, Ethan drank 2 drinks tonight and I gave him a water gravity feed through the tube.  He should be getting a minimum of 40 ounces of fluids per day and he's only been getting 30 on a good day, so we have to fill in with tube feeds til he recovers his drinking. 

Take care, I hope everyone stayed safe through the tornado warning in Cincy tonight. I kept an eye on your weather for you...! Miss you all!

Saturday, April 28, 2012

We had another Pirate themed Saturday!

Hi Friends,

Friday, 4/27/12

Ethan woke up at 5:45, but was good and calm while getting ready.  He walked right into the feeding room and took the empty spoons with no trouble. The real food did not go so well.  He spit the sweet potatoes and the pudding and let out a couple of really, really loud screams.  He settled down for the yogurt.  Each meal takes around 30 minutes right now.  I predict they will take a bit longer next week when Ethan starts new foods.  We have a limit of 60 minutes at each meal.

The feeding team decided to stop the empty spoon part of the meals and upped his intake to 24 bites of his preferred food.  Lunch and dinner went well and he ate all his bites.  Then we had a relaxing night playing in the play yard and hanging out in our room at RMH.

Saturday, 4/28/12

When Ethan eats outside of the feeding program, I have to spoon feed him his pureed foods because he will only feed himself highly preferred food like vanilla ice cream and pudding.  This means when he is finished eating, I haven't started eating.  He is not one to patiently linger at the table while I eat, therefore, I am queen of wolfing down food on the run and queen of indigestion.  He ran after his meal so I missed the volunteer cooked breakfast and  lunch at RMH today. 

We went out to see Pirates-a Band of Misfits at the White Marsh cinemas this afternoon.  Road trip! I relied on our handy dandy in dash GPS, but alas, I missed the first turn.  Mr. GPS then took me on a figure eight drive down a series of one way, skinny little streets AND took me through a Camden Yard parking lot on my way to I-95. Holy cow. It's game day here, we were early for the game so it wasn't too crowded, but it was still stressful.  I ended up on the light rail tracks, oops, trains were coming from both directions, but luckily, they both stopped at my intersection and I backed up quickly.  (Cincinnati street car supporters take note...It is DANGEROUS to have a train on tracks running down a city street. Tourists like me are liable to cause an accident.)

We finally made it to The Avenue at White Marsh and into the movie.  Ethan loved the movie, but I was lukewarm.  I think I need to see it again, but without the driving drama before-hand.  We made a stop at Target and, Dayna Hamm, you will be happy to know we found an appliance safety lock that I think will work on our door. Yay, I'll get to shower tomorrow morning!

I was starving after our outings, so I thought I might take Ethan out for his beloved spaghetti.  We found Bertucci's, an Italian place by The Avenue at White Marsh.  I figured this might work with a little pre-planning.  I asked for an out-of-the-way booth, ordered right when we sat down, paid and got to-go boxes in advance, and warned the waiter that we would likely rush out.  I was right, Ethan hopped up and ran out the door in 20 minutes. The food was delicious.  I didn't get a good look at the menu because I ordered from the appetizer menu, but the roasted olives, polenta in fresh marinara with basil and parmesan, and the flat bread with pesto, white cheese and bacon were delish and I have leftovers for tomorrow. 

We are excited for tomorrow. Mark's uncle Jim, who lives here in Baltimore, is taking us to his granddaughter's horse show tomorrow morning.  Fun!

Take care and thanks for all the well wishes!  We miss you guys!

Thursday, April 26, 2012

We're here and settled in!

Hi Friends,

Ethan and I are completing our second week in the intensive feeding program at the Kennedy Krieger Institute (KKI) in Baltimore, MD.  KKI is part of the Johns Hopkins Medical Center (JHH) and our building is right next door to the iconic JHH building whose dome is used as part of the JHH logo.

Kennedy Krieger is a hospital for special needs kids.  Our KKI building houses intensive behavior therapy for kids with severe feeding disorders-like Ethan, an intensive behavior therapy program for autistic kids, and a spinal cord injury rehabilitation center.  KKI, like JHH, is growing like crazy.  In the four years Ethan has been followed by KKI, they have built 2 new buildings in this complex and are in the process of building a third.

Ethan has a severe feeding disorder.  He also has a significant medical history with airway reconstruction taking up most of his first three years.  When his airway was corrected we found he would no longer accept foods.  He went through several years of feeding therapy and was finally admitted to KKI in 2009. At that time, he was down to one food and one drink.  He left the program with 8 new pureed foods and a recommendation that he have surgery to reimplant an artery which was wrapped around his esophagus. Within two years of the heart surgery, Ethan has doubled his weight, but will not accept any new foods. We came to KKI this time to expand his menu and to get him to feed himself.

There are lots of people in wheelchairs who come and go in the KKI and JHH buildings.  This scenario was highlighted today when we had an all building fire drill.  If there is ever a fire here, I hope it is small, smokeless, and quickly contained. We had to walk down the steps with the kids in the feeding program.  Small kids do steps fairly slowly.  Then the kids with ventilators and suction have to be transferred into stair chairs.  Stair chairs are wheelchairs with caterpillar tracks that run up the back.  A helper holds onto the front and another onto the back of the chair and the chair goes down the steps at an angle, riding smoothly on the caterpillar tracks.  All the kids were calm and did a great job with the evacuation.  It was quite the production with the strobe lights and intercom voice, but no one panicked.

The following are highlights from previous days in the program.   Ethan is slowly calming down and is only partially fighting the feeder on his preferred foods.  We are scheduled to start new foods on Monday-that's when the real fun will begin.

Sunday, 4/15/12

Ethan and I drove to Baltimore on Sunday, April 15th.  Thankfully, Ethan is a calm car rider.  We met Mark, Emma, Evan and Ray in Pennsylvania for lunch on the way. It was good for the kids to see each other.

Ethan and I rented an apartment in Fells Point, a nice historic district in Baltimore, while we waited for a spot in Ronald McDonald House.  The rental was great.  It was nice and clean, had secure, off street parking, was only a block or so from the waterfront, a park, and the main square. We spent a nice first week there, going to the hospital during the day and taking long walks and playing in Thames Street park in the evening. 

On the Friday before we left, Friday the 13th, Ethan had his PEG replaced with a gtube.  The site looked great until Sunday night. I crossed my fingers because I had seen his gtube site look red and sore before. By Monday morning, and our first check in at Kennedy Krieger, Ethan's tube site was inflamed and he was walking like a little old man.  The dreaded Cellulitis was back. 

Monday, 4/16/12

Our schedule at Kennedy Krieger is pretty full. We check into the triage station first thing every day to have vitals checked. They monitor weight very closely here and check to make sure each child is well before they start their day.  

Because Ethan's tube was so inflamed, we had to get an antibiotic.  Ethan was also dehydrated because his feeding was off since the new tube was installed so I had to give his a rare gravity feed through the new tube. 

We had to report all current health info to multiple staff members, do a quick tour, and get our schedule for the day.  We also met with the nutritionist, the social worker, and had two scheduled feeds the first day.

Ethan remembers Kennedy Krieger from his last stay so he was NOT Happy to be here.  He frequently dropped to the floor, refused to walk, and told me to 'Get out' and 'Go away'.    

Our first feed in the feeding room was lunch.  He took zero bites, even though the food presented was his normal food.  He was mad and threw the tray off the table, fought every attempted bite, screamed and fought to get control of the dvd player.   Same thing at dinner. I was the feeder at these meals so KKI staff could get a good idea of his feeding style.  

My phone died during the day so Ethan and I spent the evening at an AT&T Wireless store in Nottingham, MD, a Baltimore suburb. We received great service from Charles. He set me up with a new phone and spent three hours loading all my contacts and pictures from my old phone.  He even spent an hour after the store closed so he could finish loading my data. I've never received that kind of service in Cincinnati, but then I've never walked into the AT&T Wireless store in Cincinnati sobbing. 

Tuesday, 4/17/12

On Tuesday, Ethan's tube was even more inflamed.  He had a goose egg growing under the tube's entry site.  Triage nurses wanted him to see another doctor. While we were waiting between appointments, Ethan was playing quietly on the floor when he looked up at me with a strange expression and he pointed to his tube. When I looked at his tube, there was a half inch wide trail of bright, bright red blood coming from his site and flowing down onto his pants. My first thought was 'Oh no, his tube fell out.  Why didn't anyone tell me it bleeds when the tube comes out?'. On closer inspection, the tube was still in, but I couldn't figure out why it was bleeding.  One of the nurses helped clean up the blood and made an appointment to see a GI doc in clinic.  There was some discussion of the blood being due to cellulits, a possible pull on the tube, or Ethan's skin was having a reaction to the plastic in the gtube.  Plans were made to replace the gtube, but we have to wait til the infection goes away. We received two more prescriptions, one to combat the possible allergic reaction to the tube and the other to combat possible additional infection from the anti allergy lotion. 

Ethan ate two foods at breakfast where I was the feeder. The lunch and dinner feeds were used for toy selections to find out what Ethan's preferred feeding reward would be.  Surprise, surprise, his favorite is a Thomas DVD!

Ethan is still able to eat when we leave KKI at night so Ethan ate like a piggy when we got back to the apartment.  We walked around Fells Point.  It is a beautiful neighborhood and the weather was awesome!

We heard from Ronald McDonald House today.  We get to move in on Saturday!

Ethan's tube looked scary horrible on Tuesday night. It was oozing pus and blood all day and he couldn't stand to have it touched.  Every time I had to administer the antibiotic via tube or apply the lotion was a screamfest.  I thought we would end up in urgent care in the middle of the night.

Wednesday, 4/18/12

The tube looked much better in the morning! Whew! I'm not sure whether the anti allergy or the antibiotics were doing the trick, but I'm glad his infection is improving. 

Ethan refused all bites from the feeder at breakfast and lunch. 

Ethan was sent to see another doctor about his tube.  It is not quite as sore, but tissue is coming up out of the gtube site. We discussed swapping out the tube in a few days.  The big question is whether Ethan needs to be sedated for the procedure.  We decided we will try to do it in office when the time comes and if we have no luck to then we'll try sedation.

Ethan was also referred for a consult with a KKI Down Syndrome specialist to review Ethan's meds to see if there is something else we can try to improve behavior and feeding.

I had to give Ethan another gravity feed today.  He knows he can push out his stomach and stuff will come out, into the tube and up into the syringe.  He loves this new game. Me, not so much.

The feeder changed the protocol to give Ethan only empty spoons at dinner.  She wanted to see if Ethan understood what he was supposed to do.  He did,   Ethan ate every empty bite. 

Ethan ate like a pig again at the apartment, but threw it up right away. lovely.

Thursday 4/19/12

Breakfast was an 'empty spoon' meal. Ethan took all empty bites. At lunch, Ethan was allowed to make choices about what to eat. He chose nothing.

Ethan had OT and Speech therapy today.  I only observe these sessions on occasion. 

I had a meeting with Dr. Gulotta, the head of the feeding program/Ethan's case manager and Jennie, Ethan's main feeder.  We swapped ideas about how to get Ethan more comfortable/compliant in the feeding room. I suggested we use a choice board with pictures.  We've had good success using a choice board and picture schedule in previous therapies so Ethan is very familiar with the concept.  We also discussed the fact that Ethan is a tough cookie who has had 9 years of experience in rejecting food and not much experience in relinquishing control.  So...I need to be prepared for slow progress. 

The feeders employed the choice board at dinner and it went well. Ethan actually took 3 bites of his preferred foods at this meal. 

Friday, 4/20/12

The feeders used the choice board at all meals.  The first round is where Ethan eats 10 bites from an empty spoon.  He took most of these with no trouble. The second round is where three of Ethan's preferred foods are on the board, he chooses the food, then has to take a bite.  He chose crackers, and took 2 bites, then he chose pudding and took a bite.  He would not choose the sweet potatoes or take a bite.

Saturday, 4/21/12

We went to Privateer Day in Fells Point.  This appears to be a festival dedicated to adults dressing up like pirates and drinking mass quantities of alcohol.  We only stayed for the kiddie part of the day. 

We moved to Ronald McDonald House in the afternoon.  We will miss Fells Point, but it will be nice to be more settled. RMH is very nice, and there are 4 of us who were also at RMH last time we stayed for 2 months.  It's kind of like a small family reunion.  

One thing about Fells Point is that everyone jogs here.  Everyone.  We probably saw 30 runners in the first block of walking.  Ethan obviously thinks this is cool because he now wants to run everywhere.  'Won, Won', he says and runs. Fast. I'm having a hard time keeping up with him.  This new jogging phase could be a problem! 

Sunday, 4/22/12

We ran errands, hung out at RMH, and I filled out a zillion pages of paperwork for tomorrow's appointment with Dr. George Capone, a Down Syndrome specialist at KKI.   Ethan ate like a champ all weekend.  KKI feeders made us enough of his preferred pureed food for the weekend  so it was very easy for me.  Yay!

Monday, 4/23/12

Ethan was in a bad mood at breakfast.  He took all empty bites, but no real food.

He had a good session in speech therapy and actually drank water from a cutout cup and only coughed up once.  It was great to see.  He had a meltdown when the ST put veggie puff crumbs in his mouth, tho. 

Our big event of the day was a two hour appointment with the KKI Down Syndrome specialist.  He reviewed Ethan's history and targeted an evaluation of Ethan's current medication list and a review to see if Ethan is on the autism spectrum.  

Ethan has very limited communication and lots of physical quirks that look like autism so there has always been a question in the back of my mind on whether autism is part of the Ethan equation. Dr. Capone pulls information from multiple areas to try to find places of improvement.  He is going to request records from Cincinnati Children's Hospital so he can looks for links in Ethan's Down Syndrome, Sleep Patterns, Behavior and Eating. He's trying to see the big picture of Ethan. 

Ethan was given a prescription for Resperidon, a drug that should help Ethan focus and hopefully eliminate some of the hand flapping, inappropriate vocalizations and inward focus.  It may also increase Ethan's appetite, a bonus for the feeding program. 

Ethan had OT, Behavior Therapy (I usually forget to mention this, but he has this twice a day in the playroom) and he ate his bites at lunch and dinner.

Tuesday, 4/24/12

Our day started out rough.  Ethan escaped from our room at 6:30am while I was in the bathroom.  I found him playing at the train table two floors down and I received my first ding from the RMH mom for not attending to my child...and for not having shoes on as I ran down the steps. 

Ethan is not too happy about being back in the feeding program.  This comes out in behaviors.  After being dragged back to our room, he fought me getting dressed, he went all limp at triage and refused to stand up so he had to weigh in by sitting on the scale.  My favorite behavior today has to be the snot blowing. Ethan comes up to me like he needs a hug, I hug him and he blows a snotfest into my neck or on my shirt. Oh yeah, fun times!

At breakfast he fake cried, continued to act limp, but warmed up and took most of his empty bites.  He spit the real food.  Ethan loves Thomas the Tank Engine dvds so his reward is watching a dvd.   When he spits or refuses a bite he loses his reward.  The feeder turned the player off and darned if the little booger didn't reach around the feeder and turn the dvd back on while she was attempting to feed him the next bite.  They now employ a 'blocker' in the feeding room to keep his arms in check. 

At lunch he fought the empty bites so the feeder then used a nuk brush in the side of his mouth in lieu of the spoon. Ethan hates this. The feeder upped the number of real food bites to 12 and he did ok with the real food at lunch.

I had to drag Ethan kicking and screaming into OT. (Is this day over yet?) The OT reported that he calmed down and did 'ok' in the session.

Ethan must have been tired at the dinner feed.  He appeared to be limp and bored, but was fairly compliant.  He took all 10 empty bites and 12 bites of real food.  Real food is still his preferred food, pudding, vanilla yogurt and sweet potatoes. No new foods yet.

Wednesday, 4/25/12

Ethan woke up at 5am (yawn). Gotta love the east coast early sunrise. He fought tooth and nail getting in the car because he didn't want to go to KKI. His fighting must've worn him out because he fell asleep on the drive to KKI. 

He had to be dragged into the feeding room for breakfast. He went limp and refused to walk so they maneuvered him under the armpits and half carried half dragged him into the room.  He took all 10 empty spoons and ate 4 bites of pudding, but it was a no go on the sweet potatoes and yogurt.  Spit, Spit, Spit.

He took everything at lunch, and we spent at least an hour outside in the therapy garden.  It was gorgeous outside so we watched the cranes at the building site next door and walked in the labyrinth. 

He ate everything at dinner too, even when they upped the bites of his real food to 18 bites. Dr. Gulotta observed this feed and told me the plan is to continue to up the bites of real food through this week and we'll start of new foods next week.

Sunday, March 25, 2012

We're heading back to Kennedy Krieger Institute!

Hi Friends!

It's been a long time since I posted to this blog, but here we go again!

Ethan is scheduled to be readmitted to the intensive feeding program at Kennedy Krieger Institute, Baltimore, MD on April 16, 2012. It has been almost 3 years since his last admit at KKI. You can read the history in the blog below.

In a nutshell, we were sent to KKI because Ethan would eat only 1 food and drink only 1 drink at 6 and a half years old. During his time in the feeding program, he made some progress, but it was determined that his feeding issues were due to physical issues, namely an aberrent right subclavian artery which was wrapped around his esophagus. We left KKI in July 2009 and Ethan had surgery to reimplant the artery in its proper place in November 2009. Two years post surgery (2011) Ethan had nearly doubled his weight, but would still not accept new foods.

Ethan was also diagnosed with ADHD/Combined Type and a feeding tube (gtube) was inserted for medication administration. After months of evaluations to ensure no additional physical issues remained, Ethan is heading back to Kennedy Krieger to work on intensive feeding therapy. We hope to expand Ethan's diet and to get him to feed himself independently.

For those of you new to the blog, Kennedy Krieger arguably has the number 1 feeding program in the world. It is located at the Johns Hopkins Medical Center in Baltimore MD. KKI takes 12 kids at a time and works INTENSIVELY on feeding. Last time, Ethan's daily schedule included medical checkup(s), 4 one hour feeding sessions, Occupational Therapy, Speech Therapy, Play Group, Behavior Therapy, and Parent Training. KKI employs Applied Behavior Analysis, an extremely effective therapy option. Kids come from all over the world to be part of this program.

I'll try to update the blog as often as I can to keep you updated on Ethan's progress and on his antics.