It's so good to be home. Still exhausted...overwhelmed...but happy to be home! Noah is still struggling a bit with those lungs, but we are carrying on in faith that things will continue to improve and we will be off to Disney in less than 10 days!!! Kailyn & Joshua are at Gradma & Grandpa's for the long weekend, so it is quiet here. We dragged out the suitcases this morning, and I started the tedious chore of packing. So much still to be done, but at least I have begun!
Another blessing yesterday...we got a call from our wish coordinator to let us know that we have been given a night at the Sheraton hotel (which is attached to the airport) on the night before we leave! We literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! A huge, huge thank you to Mary from Child Life for contacting the wish foundation and making this happen for us. You have blessed us...this will make our travel day so much easier!
Our church small group has a weekend at Thief River Falls planned for next weekend. Although we had planned to go, we have now decided it is just too much. We have neither the time, energy or money for it. So the plan is just to keep Noah home, away from as many people as we can until we leave. If I could put him in a bubble I would!! The hotel at Thief River can also be quite smoky (it's a casino and smoking is permitted)...not a good place for Noah's lungs!!
So much to post...so much to do...I will try to upload pictures soon. I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!! Thank you all for your prayers these past 10 days. Thank you also to Doris & Mary for keeping me well supplied with coffees. Oh, how I appreciated that!!
An interesting tidbit...Noah's NPA in hospital came back growing Hemadsorbing Virus. From my googling, it looks like a type of influenza...probably the cause of the pneumonia, and probably what the other kids had as well. We did give Noah a flu shot before leaving hospital to cover him from catching anything new.
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3 comments:
Nichole, I have started reading over the history of your Son. Matt Griffin pointed my wife and I to your blog. We have a daughter (Evelyn) with the exact same deletion. She will be 2 on Mar 9th.
I think we could definetly help each other emotionally and on an information level. My wife has just started reading the blogs, I'm trying to soak it all in, but there is a lot of information.
If you want to talk about your son or get some info, pictures of our daughter contact us. My email is theefxman@charter.net
Here is a Christmas picture, and a picture from last June.
http://webpages.charter.net/robmocca/christmas2008.JPG
http://webpages.charter.net
/robmocca/Jocelyn_Evelyn_June08.JPG
You'll have to highlight, then copy+paste the url to the pictures into the address bar at the top of your browser.
If you contact us I'll share the details of evelyns condition so far.
Keep fighting the good fight!
Rob
I will be praying for you tomorrow as your working, that it will be a good diversion for you, and we are praying especially for strength for you. Take care of yourself. God is in control...and my GOD is able to supply all your needs...love you so much...mom
I'm so glad to hear you guys are home! Somehow I just know this Disney trip is all going to come together for you guys - as it sounds like it already is :)
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