Update Time

Family Walk = Simple Pleasure :)
Believe it or not I have started three different updates since the last post.  However, things have been a bit back-and-forth feeling about Nathan's last appointments and digestive troubles so I have refrained from actually posting anything.

But, lots of you have been asking and we had a final conversation with Nathan's pediatric surgeon here yesterday - so here goes...

Nathan will be headed back into the hospital for surgery early next Monday morning.  The results of his biopsy along with his endoscopy has led to the conclusion that the problem he has been having for the last almost six months hasn't gone away and won't improve over time.  So, Monday morning they are going to try to fix that.  There are actually 4 procedures that are possibilities at this point and the surgeon won't really know which one will be the most successful for Nathan until he can "get in there."  While they are doing that, they will go ahead and put in a more permenant feeding tube for Nathan.  The ultimate goal/reason for surgery is for him to be able to eat by mouth but it might take some time for him to get to that point.  He hasn't eaten more than 1 ounce at a time by mouth since February 3rd and there is some concern that he might not be swallowing very safely.  So, in the event that swallowing therapy or things like that are in his future, the feeding tube will at least allow him to keep getting the nutrition he needs in the mean time.  The nice thing is - this one will be just a little port on the side of his tummy.  He'll be more comfortable without a tube down his throat and this momma will be happy to get to kiss on both cheeks again! 

After surgery he will be in the hospital for another 7-10 days recovering.  His track record for timely recovery isn't great...  so I'm telling myself to think of 2 weeks and then be surprised if it's sooner.  Here's to hoping my eternally optimistic husband is right and we're out in 7-10 days :)

As for his ophthalmology appointment...  First of all, those offices are just depressing.  They keep them so dark which I know is because they are dilating eyes but my gosh.  3 hours there and you feel like you are coming out of a tomb when you finally emerge...  Anyhow.  It was a pretty discouraging appointment overall.  Nathan's vision is definitely delayed.  Is it because of his time in the hospital?  They don't know.  Will he catch up?  They don't know.  Also, he was diagnosed with nystagmus (or for us common folk what I like to call "shakey eyes".)  It means he has trouble focusing well especially at certain angles.  What kind of nystagmus?  They don't know yet.  We'll have to go back for more tests.  They can do surgeries to help with that a lot of times but will it help Nathan?  Again - they don't know yet.  As you can probably tell, it was a bummer to be told that yet another system is "not as it should be" and to have another area where there seem to be a lot more questions than answers.  But it could be that like everything else, it's just a little bit of a slower go for a kid who has spend so much of his first 6 months in a hospital and on meds.  Maybe surgery and a cute pair of glasses will allow him to see just fine. 

Although it's hard to believe we are going back into the hospital again this is the first time in 6 months we've known about it ahead of time which has allowed us to prepare a little better - emotionally and logistically.  The thing that is hard is knowing that the doctor isn't quite sure what he will find or what will need to be done.  Please pray for clarity and wisdom for him Monday morning (and a good night of sleep on Sunday!) )  Pray for sweet moments together over the weekend and a heart of surrender if something changes...  Even as I type this Nathan is having a runny nose, which isn't a big deal at all except that they won't put him under if he has a cold (and for good reason!)  It sure would be nice to get this thing under way...

We will put up an update Monday night or Tuesday.   Thank you always for your prayer and support.

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