wow.

Well, it's been a busy, busy week. I think that this has been the longest that we have gone without posting a new update. I apologize for the delay. :)

I returned to work around the time of the last blog. I'm still trying to get it all worked out, but everything is beginning to come together. Thankfully, my boss and the angel that helps cover for me are both very understanding about Everett's appointments and everything else that has been going on. This has turned out to be the best time of year to have all of this happen. If we had a whole baby, December or January would have been good times to deliver, but under the circumstances, this is turning out to be a blessing. I would never have had this kind of flexibility going into the summer.

Speaking of blessings, I have been reflecting lately on our situation. Thankfully, no one has said this to me yet, because I think it sounds condescending and unhelpful when others say it, but God really does not give us more than we can handle. Unfortunately for Everett, I think we have been handling this all fairly well, so more just keeps getting heaped on our plate, but we can still take it, so more keeps coming our way. But, I think about it, and here's where I get a bit loopy, but, what if there is a quota for broken babies? What if there is a certain number of birth defects that must be dealt out each however long? I mean, they talk about everything in percentages, right? All of the doctors tell us there is a x% chance this will happen, or a y% chance this will occur. And for all of Everett's problems, those percentages are pretty low. So, what if he if fulfilling the quota so that other babies are not born broken? What if there are parents out there that could not handle a broken baby, so Everett has taken some of that burden out of the world? Then it all doesn't seem so bad. Part of me likes to think of it that way, that he has helped the balance in some small way. The other part is sad for the baby that made it possible for Everett to be as perfect as he is in every other way.

Okay, my ramblings are done. Now for the updates that you have all been waiting for.

We went to the Urologist on Thursday. Everett does have chordee. Basically, his penis is bent and he will have surgery to correct it when his ostomy is removed.

According to the urologist, it does look like Everett may have a tethered spinal cord. This appears to be easily corrected by surgery, and again, we are blessed for it to have been caught early. He has concurred with the general surgeon's recommendation that Everett will have a MRI at 3 months old to confirm the diagnosis, and then we will add a neurosurgeon to the team. Most likely, the general surgeon, the neurologist, and the urologist will be at that surgery. It takes about a month to recover from that surgery. Then, Everett will undergo the pull through for his anus. The general surgeon, and possibly the urologist will be present at that time. Then, 6 weeks later, his ostomy reversal will be done along with the chordee correction and circumcision.

Hopefully we will be able to time these surgeries just right to get them completed before March 1 when our plan year restarts.

We have a meeting on Monday afternoon with ECI (Early Childhood Intervention). Everett was referred because of his VACTERL, but also because of his hearing loss. Again, it is because of the hearing loss that they are coming out. If Everett is accepted, then the school district will send someone out to our home on some kind of regular basis to work with him now. Once he is 3 years old, then the school district takes over with head start or some other such program.

We'll let you know how it goes, but it seems that we will not know anything until after his ENT appointment next month.

On a happier note, we are in Nacogdoches this weekend for my friend's wedding. The boys have been having a good time around town and in the hotel room. I will post pictures when we get home.

Again, sorry for the delay between posts. I will try to post at a minimum of once a week from here on out. :) And, I'll make Dylan start posting pictures more regularly, since I know that's what everyone really wants. :)

xoxo
Margot