Time for an update on Peyton. It's been a few weeks!
Well, for the first time in about four and a half years, Ron and I got out of town...on our own....for a few days!!!! I can't even begin to describe how much this break was needed - for both of us individually and as a married couple. Truth be told, it's a crying shame that it has taken this long to get this bit of respite. We needed some "us" time to regroup. They say that 85% of families with special needs children split up. 85%. You can't even imagine how much we want to stay in the 15%. If you have a special needs child, perhaps you are in the 85%, and just know that my heart and prayers go out to you. I can't imagine how you do it. If you don't have a special needs child, it may be impossible for you to even imagine that this can happen, after all, marriage is a commitment, hard work, but worth it, etc. It may be unfathomable that this could happen. Thankfully we're not (and have never been) at the point of considering a split. That said, I can totally see how it happens. Totally. So, once again, I can't even believe it took us this long to get this respite. Now that it's over, trust me, it's not going to be another four and a half years til it happens again.
Ron and I left on April 29th (our 11th anniversary) for Gatlinburg, TN. We stayed a couple nights in Sevierville which is not too far from Gatlinburg. The third night was spent in Gatlinburg itself. We did a lot of sight-seeing. The mountains are absolutely breathtaking. I've always loved traveling to the mountains - any...doesn't matter where. We spent the better part of the 30th at Dollywood - yes, the amusement park of Dolly Parton's. It was quite a lot of fun. We had a blast. It really took us at least two full days before we really started to decompress. By that time it was nearly time to come back.
I missed the kids tremendously. We had round the clock nursing set up for Peyton, and my dad came down to visit and he looked after Moira. I can't express enough our appreciation to all involved in making this happen.
Our frames of mind were different when we came back. We felt somewhat refreshed. Still tired and whatnot, but we got back a little bit of ourselves in that time.
We returned on the Monday and everything was fine. Woke up Tuesday and began the day as usual and then it was like everything came crashing down in on me. Why? Oh, if you've been following this blog for any amount of time recently, you may have a clue. If you follow me on facebook, for sure you know! Peyton's tube was clogged. Right off the bat. Before Moira even left for school at 8am, I knew I was taking Peyton to the ER. Again. Everyone around me can attest to the fact that I was beyond upset, frustrated, angry, etc. It was like our respite was a dream. Like it never happened. Like we could have saved ourselves a lot of money and not left, because in an instant everything was as stressful as ever. I felt like God was just taunting me with a nice getaway only to have everything revert back to the horribleness of tube clogs and ER visits in an instant. Ever feel like someone's just playing a cruel joke on you? And sitting back laughing while they watch your reaction to the attacks? Yeah, that's how I felt.
So here it is: if EVER my own life depends on a feeding tube, you can just forget it. Unless they come up with a better solution....forget it. As for Peyton, it is what it is and we will persevere because it is for her benefit that we do all of this. But, my goodness, if ever there was an invention that had such amazing benefits on the one hand but horrible potential side effects on the other.
Prior to our trip, we'd gotten our nursing schedule for May, and, again, it had more holes than a hunk of Swiss cheese. Since our return, we have been dealing with trying to get things straightened out. To say it has been stressful and frustrating is such an understatement it makes me laugh. Everything we're trying to do is to ensure that Peyton is getting the medical support that she needs at home so that she doesn't wind up back in the hospital as much as she has been in the past year or so. If that's not happening, then she's not benefiting. If she's not getting what she needs, then it's not giving me the respite I need at home on a daily basis. That, in turn, does not do Peyton any good. Everything about the schedule we need is about what is best for her - because it works - because it meets her needs. When the schedule doesn't happen as it should, none of that happens.
Please pray for us. We've been back a week and a half and I know my own stress level and frustration is absolutely sky high and beyond. It does no one in our family any good to have even one member of the family feeling like this. I keep hoping and praying that everything will work out. I'm still hoping and praying.
Next time I see a Carnival cruise ship docked in downtown Charleston, I may just become a stowaway!! Just for a little bit! :)
In good news, Peyton had an eye exam under general anesthetic last week and that went as well as we could expect. Her prescription didn't really change, and the doctor is encouraged that there has been slight growth of her eyes.
I have another potential piece of good news...but I need more info and will post on that later. A few know what I'm referring to and if you do know, then just know there's no development in that area yet. I'll leave you all with that little teaser!
Not much else going on. Isn't that enough???