Last entry for now

We can't believe it's been almost 4 years since running this roller-coaster of a ride!  Isaiah has ended up getting his tube back out for the summer (for now) and hopefully is starting a fruitful journey into the next stage of his life.

At this point, we would like to thank everyone for their continued support and prayers during this journey and hopefully those of you who have touched us in so many ways receive more blessings than we could ever hope to repay.

As with anything overtime (and technology changes), many of our links are not working or have moved - so basically we are going to leave this site up as is for our own records and hopefully a good, spiritual read for others who may be starting this journey.

Another scare and repercussions

Another scare this past Friday.  Isaiah was up all night screaming and retching.  We went to Children's around 630a and found him to be severely dehydrated again...  This has continued to be an issue since we first took the tube out last year.  So, at this time he has the tube back in.  He was not very happy, but the pain he was experiencing Friday am was from his kidneys starting to shut down.  We were not admitted, but he has fluids running 24hrs a day.  This weekend, the poor fella didn't even get out of bed unless to the bathroom.  He did start to come around last night and did manage a shower, but still not talking very much and has occasional retching after he takes his meds.  He has spring break next week, so he's missing this week of school - which is going to put him behind again....

Quick Scare - and back home

Hello, all!  Well, Isaiah hadn't been feeling well probably the last few weeks.  But he didn't develop a fever so we weren't sure what to do.  On cue, Friday he developed a fever around 8pm and we're off to the hospital.  All the staff were super helpful and we found out one of the doctors from Omaha is now here!  Isaiah was diagnosed with Influenza - B, given a lot of fluid and everyone else in the family went to get Flu shots....  Thanks, Isaiah!  But no issues with the transplant - as always anytime Isaiah gets sick, a trip to the hospital is in order.  We didn't have to go to Omaha, but we've had to take a lot of time off work the last few weeks.  Hopefully he gets back to school soon!

Yearly Check-up

We took a trip up to Omaha for the yearly eval.  Boy looks good!  Kinda skinny, but he's been growing and gaining a little weight so he's doing OK!  And, notice no back pack.  He has been without NG tube for 6 weeks now.  He does have a healthy regimen of formula he has to drink, but he loves being mobile! 

Slow updates are a good thing

Hello, everyone!  I just wanted to put a quick update.  Sometimes when you don't hear anything, it's a good thing.  And since his last bout in October, things have been going well.  We're currently working on getting the tube taken out permanently - of course he has to help by eating/drinking.  But as he is getting older, I think he is starting to become more self aware of his limitations.  The tube is just another reminder of being dependant on others, and if it's one thing we know about Isaiah is he loves his independence!  So we have another follow-up appt next week and hopefully his drinking enough nutrin jr and water to stay hydrated.  Thank you all for the continued support!

Back to school

well he made it a half a day at school.  lots to catch up on, but he was a little tired and needed a break.  full day tomorrow and labs again on wednesday.

And we're home again!

They decided just to watch him over the 48hour period and have let us come home.  Thank you, Lord!  The boy is looking pretty good and is getting back to normal.  We have a few things to clear up before he returns to school on Monday, but overall nothing we haven't dealt with in the past.  Thank you all again for the support.  He is a resilient boy!