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.
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.
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!
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!