Hi Folks,
The novelty of being here has definetly worn off. We just finished another pack and spit meal. Lovely. We have to feed him 5 times per day and each feeding is taking between 20 - 50 minutes, not including the setup and cleanup.
A friend of ours, who very nicely finished painting the trim on our house, sent a picture to us of the finished product. I am now officially homesick! Our house looks great Tommy! Thank you! Thank you too, Peter, for cutting our grass! You guys rock!
We had our swallow study today. Ethan was very cooperative. We still need the final report from the Speech Therapist, but I don't think they found any problems. Good thing!
We have our much anticipated cardio appointment with the highly rated Duke Cameron, MD on Thursday morning and then it's just a few more foods til we're home. Our official discharge date is July 13th. We can't wait! It will be nice to have our whole family together again and back home.
Please keep one of our families in your prayers. Normally, I try not to include names, but this kid has been in the news alot so I'm sure it's ok. KKI has a lot of different intensive programs for kids with disabilities. We met a family whose 5 year old daughter, Margaret, was in a car accident on January 2nd. She broke her neck, among other bones, and has had quite an uphill battle. She's been in various hospitals since the accident and FINALLY got to go home today. Her family is going to have a lot of hard, hard work ahead of them, but they are fighters. Please send your prayers their way.
If you want more information about this beautiful girl and her family, her blog is www.caringbridge.org/visit/margaretromph
Have a great night!
Mark, Molly & Ethan
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So, what do you do about the pack and spit routine? I'm curious...
ReplyDeleteWe've fed Will everything from pureed LaRosas to pureed Skyline. Seriously gross. We just recently figured out that regular ole' unpureed food is better for Will due to dysmotility in his esophagus. My gag reflex has thanked me.
He's made such great progress. To quote one of our favorite movies...just keep swimming, just keep swimming. ;)
Hang in there.
Pssst. Of course I mean that Ethan has made such great progress, but I wasn't sure it came across clearly.
ReplyDeleteMust. Get. Some. Sleep.
Are there some new foods that Ethan is eating regularly or is he packing and spitting everything? We need to get together when you get home! Prayers for you guys and Margaret and family. Love you.
ReplyDeleteEthan packs and spits, or sometimes just packs, pureed chicken nuggets. When he won't take a bite, we remove his incentive and say 'Ethan, take a bite and we'll turn Thomas back on.' When he packs, we continue for 3 bites, then remove his incentive and say 'Ethan, swallow and we'll turn Thomas back on.' Then we wait. And wait, and wait. If he spits, we just spoon it back in. He's getting better with the packing today. I believe it's the routine that brings progress. Finding the routine that works for each kid is the big problem. We're going to introduce a new food soon, either pureed pork & beans or pureed peanut butter and jelly sandwich. Can't wait!
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