Taking a feed while enjoying some cartoons (in Canmore for a night away with mommy and daddy).
"What are we doing, mommy and why am I wearing this funny suit?"
"I hate swimming!!" He screamed the entire time.
"This is more my idea of fun!"
Our attention has moved to packing and moving in about 3 weeks. We have decluttered, made many runs to the thrift store and sold a bunch of stuff on kijiji. Thanks to Terri and Jen, we've made a big head start on packing too. It is a good distraction for me right now as this pregnancy is getting tough with minimal sleep and constant nausea. Between Noah's daily needs and organizing for the move, I am managing. We have lots of help lined up for the move, including Jared's parents flying out (thanks!), so I am positive it will go fairly smooth overall.Noah has had 3 wonderful days after a week of fighting what we think was a flu bug. It isn't nice for a tubie to have the flu as it results in constant retching. We took him NPO (meaning no food) for almost 3 days and are just about back to normal feed volumes. He is back to smiling and playing which we missed for a while. Glad to have your happy self back, Noah! Thanks to my sister for helping out with coffee treats, Costco runs and Jared's favourite, boterkoek (butter cake) treats. We are finding it is easier to stay home and run feeds/play/nap....that means we haven't been getting out much. I accept it but find it hard to engage socially as I am the sickest in the evenings so once Noah is fed and down to bed, I'm beat! As always, Jared's gives me breaks on the weekend and I have a chance to nap or get out a bit. So, thank you for the many offers of playdates and outings - sorry we can't often take the opportunity to hang out. There will be a time when it will be easier. But for now, it is a strict schedule to get Noah the calories he needs to grow. And the retching....the drain of the retching. It remains. It is hard. I try to not be discouraged but it is so hard to see Noah in distress that often. He is a trooper and usually returns to his normal self soon after.
Noah's sleeping pattern has stabilized, although last night he had a tough time with retching and ended up being awake (but happy) for a few hours. He did sleep until 8:30am this morning which is very unlike him - we'll take it!!
Thank you for all the support for Feeding Tube Awareness Week! It was great to have a lot of interaction in the form of questions, comments etc. It really warmed out hearts to see several friends make their own Facebook statuses about tube feeding. Your support and interest in Noah's journey encourages us when the day-to-day continues on.
Please pray for our friend Connor. He is at Alberta Children's Hospital right now, being moved to ICU as his oxygen levels and blood gas levels are not improving. It is so taxing on Jerry and Geraldine and of course Connor is struggling just to breathe. Our hearts and thoughts are with you always!
Also, please pray for Noah's Grandpa D. who is having surgery today. We love you, Grandpa.
My word Noah is such a cutie!
ReplyDeleteI came upon something interesting about "bottom shuffling" as we are looking for a diagnosis for our little Mason. It seems highly likely he has a connective tissue disorder called Ehlers-Danlos Syndrome as at least part of his problems, and one of the symptoms is bottom-shuffling as a toddler. One of the highly diagnostic signs is if he has a missing "frenulum" in his bottom lip (the cord of tissue that attaches your lip to your gum). Or the same if he's missing it under his tongue. I doubt it relates to Noah but thought I would mention it just in case...and yes, it definitely impacts feeding/GI issues/reflux, the whole gammut of soft tissues, and when he is older, may cause joint hypermobility. If this is remotely the case your genetics person will want to check what kind to make sure his organs are not affected. A lot of the symptoms are not recognizable until a teen or older, but this frenulum sign is brand new they've noticed, and is helping diagnose newborns and small kiddos. Just thought I'd mention it. Mason's mommy
ReplyDeleteThanks for the idea.....we appreciate your thought and time, especially since Noah is hypotonic in his joints. We'll check into it. Again, thank you.
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