Hi Guys
Sorry, the lack of internet @ Easter Seal House has been cramping my style. It's a hassle working at this public station in the hospital (it's used so much) and I don't have the camera with me right now so I can't even give you guys new pictures. I feel so bad!!
Anyways, Josiah has been having a few really good days. It was SO HARD leaving him without a parent for 24 hours, but we survived and so did he. It's just really sad realizing that your son wasn't cuddled or really interacted with for a whole day, but we're thankful for Christine (a NICU mom & friend) for dropping in on Josiah to spend some time with him and read him a story :)
Josiah had his Upper GI study today: basically it was the exact same thing as his contrast study after his stomped his G-tube out, except the doctor took one more picture just to make sure that his organs were all in the right place and rotation. And Josiah is looking good! Wednesday is Josiah's swallowing study and we're praying so much that he'll demonstrate that he can swallow. Josiah gets so much air in his belly and the only explanation is that he is swallowing air when he's sucking on his soother. If he passes, it means he'll be able to give bottle/breast feeding a try!! WooHoo! So please be praying for him! One of the most exciting things that has happened to Marie this month is that Josiah was able to latch on to a dry boob last Friday! WooHoo! That's a BIG encouragement and a good sign of Josiah's development.
Josiah still pukes 2-3 times a day, and he's a had a couple of brady-s/dat-s/panic attack episodes over the past couple of days. Bummer. But he's doing well, and getting out of them well. He's been able to sleep longer and deeper too - just like a 'real' baby finally! - so we're very relieved about that. His puking is a response to him trying to get air out of his belly (he hasn't figured out burping without puking yet!)
Josiah might be moving to the TCU (transitional care unit) sometime soon. It means that we won't have our private room and we leave our primary nurses behind, but the BIG plus is that he will be cared for by nurses who specialize in trach care and he'll be in a open public room where it will be a lot safer and easier for him to observed. Most of his panic attacks are the result of him not be observed in time because he can't cry out for help. So the potential move has pros and cons, but the clincher is realizing that Josiah will have been care and will be able to home sooner and that's all that really matter nows.
Sometime this week we hope to track down the head tach doctor and get an answer from him about taking Josiah on trips around the hospital. Josiah is getting more time in his chairs and we've been working at getting his hand-mouth coordination going. The physiotherapist is pleasantly surprised to see what Josiah is already able to accomplish, which is so exciting to us as parents. We know that he's a little behind on the normal development scale, but that's too be expected since he has been crib-bound for so long.
Anyways, I'm going to go check in on our sleeping beauty. If he's awake, it's trach tie changing time. We're pretty much pros at it now - you should see how fast Marie can go! Thanks to Daniel & Renee D., and - oh boy, I'm going to have to do this phonic-style since I don't know how to spell your name! - 'Sigh-Ear-Ree' for swinging by yesterday!
In God's Love.
- Andrew, Marie & Josiah
3 comments:
Hey Guys:
Just read today's post and I have to hand it to you both. You are truly amazing people! The things you have gone through and the things you have learned to do so you can give Josiah the care that he needs is indeed amazing and is so much more involved than your average new parent ever has to learn or do or accomplish! Hats off to both of you!
Lord continue to bless this young couple each day in their daily lives as they not only live for You but as they care for and learn about their precious child given to them by You the creator of all Life! Be with them and guide them always.
Marie that is so cool about the possible breast feeding. If Josiah gets to accomlish that, that will be very rewarding for both of you.
Learning to be able to have a bottle would be very cool also. I'll pray about the throwing up. My new little grandson who is 7 weeks old now spits all the time and "Spews" as his mom calls it. I guess he hasn't quite figured out the burping as opposed to spitting yet either.
Hope your weekend was good for both of you. How's the new wheels? Andrew you survived your first wedding ceremony. Now it's all a piece of cake!!!
Love Sue
Sending you more prayers from an occasional reader. I've found you linked through a couple blogs that I read. I'm wondering if you would be willing to give a brief overview of Josiah's situation to help those of us that have found you part-way through your journey with Josiah?
I'm praying for you and will get my church on board, too...
Elizabeth in Kamloops
Oh this is great news to hear Andrew! That Josiah was fine the last couple of days...and to be able to breast feed for Marie will perhaps help her feel more of a bond with Josiah!!! I mean the whole dry boob thing must have been so invigorating for her!! I will definitely pray that Josiah can swallow so that you two or rather mostly Marie can have a break from pumping~ It was so good to see you guys this weekend, I'm so glad everything was alright with you and your little guy! I too can't wait till he is mobile with you in a van, so that for Riley or Ashley's wedding perhaps we'll all get to see him! *wink* I'm sure that will be such a thrill for Marie!
My prayer is that the Lord will answer you when you are in distress... with clarity and direction to see through all the emotions that lay heavy on your hearts!
I love you guys!!!
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