Apr 9, 2009

Prayer request for Jonah

I know that many of you are praying for Jonah, already, whether you found me via Patrice's blog or vice versa, and we continue to covet your prayers for him.

Jonah woke up last night for his midnight feeding with a hoarse cry, and it has set off a new round of worries for Matt and Patrice. As she posted this morning, a hoarse cry is the one major symptom the doctors had told them to look out for as an indicator of respiratory issues/laryngeal involvement.

Patrice did call the ENT, and they have told them to just keep their appointment for 4:00 this afternoon ... not to go to the ER. Patrice also gave the ENT the number for an ENT at Cincinnati Children's Hospital, where they are well-versed in EB, and she's hoping that they can effectively consult over the phone as needed.

Only 12 percent of EB babies develop tracheal strictures, but Patrice expressed concern to me this morning because Jonah has already proven to be a statistical outlier ... so she worries that he will indeed end up being part of that 12 percent. Please pray that her worries will be unfounded and that Jonah will feel relief from any blisters in his throat shortly.

Also, an update on how the mitten-wearing went last night ... when he woke up this morning, Patrice could see that new blisters were already draining through the mitten, and he had blisters across all of his knuckles as well as enveloping his entire thumb. She said that his entire hand is so swollen that it pains her ... so they now know that he's not quite ready to go without that much protection. It was a tough lesson, but at this point they still have to incorporate trial-and-error to learn what Jonah can tolerate, and move forward from there. I celebrate their bravery and pray that they'll continue to feel peace as they try new approaches, one by one.

On a more exciting note, we're close to having proofs of Jonah's birth announcements ready! I'm just as excited about these as I was when working on my own kids' announcements! My friend Heather graciously offered to donate them to Matt and Patrice, and we've been working on them to get some proofs ready to show Patrice. Jonah is such a PRECIOUS subject that it's impossible not to smile when looking at so many pictures of him in one place. In addition to supplying printed copies of the announcements, Heather is also providing an e-copy of it, which I imagine Patrice will post on the blog as a "happy" for her readers. What a thrilling day it will be to announce his birth and celebrate how far he's come since those scary, scary first hours and days in the hospital.

But the absolute BEST news Patrice shared is that -- barring any medical emergencies or situations that might arise between now and then -- they plan to bring Jonah to the beach for our annual family vacation this summer! (I want to use 11 exclamation points after that sentence, but I'm restraining myself ... barely.) This is the BEST NEWS I've heard in weeks, and I'm just beside myself with the thought of it! Hopefully it will come to pass, and we'll all get to [gently] wrap our arms around that little bundle of absolute scrumptiousness that is Baby Jonah. Please pray that God will make it possible for them to be there!

Typically when I talk to Matt or Patrice, I don't post details of it here ... I don't want to post things about Jonah's day before Patrice is able to get to it herself, which is typically late at night. However, today she's already posted about her prayer request, and -- selfishly -- once I started writing to ask for your prayers about that, I just couldn't contain myself about the birth announcements and beach trip. It's just so much fun to have some great news to think about! So thanks for indulging me this morning.


Anonymous said...

He will be in my prayers!

Amy said...

Praying for sweet Jonah!

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