We've been keeping busy with our two kiddos since Jude's last discharge from the hospital. And overall our little guy is feeling pretty good. (except for the cold he has been battling this week)
Proof: Sheer Joy!
It is obvious that Jude feels SO MUCH better physically and that life without an ng tube in his nose is the way to go.
Over the last couple of weeks Jude has been hard at work with physical therapy and occupational therapy. Physically he wants to work hard but his little body is still recovering from his surgery...we are sure that he will surprise us with what he is capable of in the coming weeks! He is already doing more physically than he was before surgery. (Rolling over, holding himself up in his exersaucer and pushing with this legs to try to bounce, remains happy during tummy-time, sitting unassisted for longer periods of time, reaching for items, reaching when he wants to be picked up......)
From an occupational/feeding standpoint Jude had made tons of progress but he is still not eating a lot by mouth. Before surgery Jude would barely tolerate any food in his mouth. He would gag constantly and throw up. Since surgery he chew on puffs, wagon wheels and teething biscuits...and he will allow baby food into his mouth but he is not a fan of swallowing any of it. We are quite sure that Jude has a terrible fear of swallowing food or liquids and/or allowing it to get to the back of his mouth and tongue. It is quite a challenge trying to teach a little person to swallow! We think that his swallowing fear comes from having SO MANY tubes in his throat throughout his long hospital stay.
Will you pray for Jude's eating? Will your pray for our occupational therapist as she helps us move Jude towards feeding by mouth? Will you pray for our endurance? It is so hard to watch his struggle with eating each day. From a mechanical standpoint Jude is fully capable of swallowing effectively (he had a swallow study done at MUSC and was cleared for trying to eat food by mouth) it is simply his fear and oral aversion.
I've been doing my research on CDH kids with g-tubes and when they usually start eating by mouth...and what I've discovered is that most kids seem to either eat in the first few months of life or not until they are around 3 or 4 years old. (Of course, it is a given that ALL CDH kids are different...but I wanted to get an idea of what the other CDH mommies were finding) It seems that kids feel a little more "peer-pressure" to eat like their peers around the 3 to 4 year old mark.
I'm still not sure if I find this encouraging or discouraging! But, what I do know is that I am asking the Lord to give Jude and both Brian and I the endurance to continue to try to get Jude to eat by mouth every day (3 times a day)! We will not give up!
What else have we been up to?
Here are a few things:
- Celebrated Annabelle's third birthday party by surprising her one afternoon when she got up from nap. She had a BLAST!
- Now that the weather is cooling down a bit we've been taking Jude outside a little more (when those blasted mosquitoes aren't out!) for walks with his sweet sister.
- Family nights out in the van. Since we aren't taking Jude out in public right now we've had quite a few "take-out" meals in the van to help us feel like we are "getting out" as a family.
- Brian and I has escaped for a few date nights out here and there thanks to my parents. (Oh, and on the 18th we are celebrating 8 years of marriage! Woo Hoo! Love my sweet hubby.)
- Lots and lots of sibling play time...seriously, our two kiddos can't get enough of each other and it brings such joy to our hearts.
Well, that is the scoop for now! Thank you to all of you who supported us (in many different ways) during Jude's second hospital stay. We could not have done it without you all! God bless!
How does this thing work?
Jude enjoying his Johnny Jump Up!