Ethan and I drove up to Altoona, PA to meet up with Mark, Emma and Evan at Obie & Ray's house. What a beautiful weekend! Sunny and 75, need I say more? We hung around Obie & Ray's house on Saturday and went to an old fashioned amusement park on Sunday where we rode a wooden rollercoaster built in 1902. We had a great time.
The one odd thing about the weekend was Ethan's feeding. Ethan walked into Obie & Ray's house, sat right down at the table and ATE ALL WEEKEND LONG. He didn't eat any new foods, but he scarfed down more of his 'safe' foods than we had ever seen. I think he was making up for his lack of eating the past two weeks at the program.
It was back to reality today. The doctors at the feeding program took all the pressure off Ethan since Friday. He was able to eat his 'safe' foods, have me in the feeding room with him, and watch Thomas videos (his reward) while he ate. Today we phased me out of the room and phased the feeder and recorder back into the room. Since he seems to be relaxing, we will soon start putting some pressure back on for the rewards and start on some new foods.
He is still not drinking much. We had to cancel Wednesday's cardio consult, because his KKI doctor wants him to see the director of pediatric cardio surgery at Johns Hopkins instead of the doctor we had scheduled. We are also waiting for the scheduling of the Gtube, or PEG, as they call it. I think the GI doc here wants to do a scope and look at his eppiglotis and vocal chords at the same time. (Please excuse my spelling, I seem to spell eppiglottis differently every time!)
That's all for now! We miss you all!
Molly & Ethan
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Molly, I just logged on again after the weekend and wanted to let you know that I am praying for things to continue in a positive way for Ethan. I read about the g tube, and while I realize that this is the last thing you wanted to do, I'm sure, I want you to know that we've been through it and are here. The g tube makes certain things easy if you end up that route...at first, we fought it, then accepted it but made it our mission to see it out, and then finally realized that it wasn't so bad after all. I'm here if you have any questions about it, and trust me, we've learned a lot of tricks along the way.
ReplyDeleteWill has many feeding issues too...including esophageal dysmotility (a new one since our group) and had trouble protecting his airway as a baby.
All of this rambling to say, I wish I could give you a hug. I'm here if you ever need a chat or have questions. Can I tell the group about E's blog? I don't think they all know about it...I found it on FB.
Heather!
ReplyDeleteThank you for your comment. Mark and I had been fighting the feeding tube all Ethan's life. You would not believe the lengths we went to avoid a tube...think 24 hours a day of feeding when he was a baby...what were we thinking?!?! If we had been followed by GI from the start I'm sure he would have had a G tube for years now. Live and learn, I guess.
At least half the kids in the program have feeding tubes and in speaking with their parents, we've (at least I've) seen that it really can make life easier. We'll be able to actually get his medication into him! Wow! And we'll be able to actually get nutrition into him. Wow! His 4 food groups right now are dairy, sugar, salt and flour! A square meal! Wow! Mark and I suspect that we'll have an improvement in behavior once he is properly nourished...so, we're good with the decision.
I copied the link to a few girls in the group. I think I'm a bit email address challenged these days so feel free to send it out. Thanks for thinking of us and I cannot wait to get back for the Sunday night gathering!
See you soon!
Molly
Molly, I'm glad you all had a good weekend! It must be great to be able to talk to all the families there that are in similar stituations as you guys. Hugs, prayers, and love to you, Ethan and the whole family!
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