Oh this sweet girl of mine. Last week was a rough one with her. For starters, we had a lot of appointments. We had 2 orthotic appointments for the brace that she still hasn't been able to wear since November, we had appointments with her GI, Nutritionist, X-rays of her abdomen, physical therapy, orthopedics for her spine x-ray and topped it off Friday night with a trip to the ER. This week was Spring Break and we were supposed to leave Saturday morning for a trip to New York to visit family. Zach and Aaron have made a trip or two for a visit but Alex and I haven't been in years. We haven't seen our godson since his Christening and he will be four this month. Our niece was born in November and we were all so looking forward to meet her. Ultimately it came down to the wire and there was just no way Alex was going to be able to make such a long road trip with all of the issues she has going on right now. I hated seeing the look of such disappointment on Zach's face when I told him we weren't going. Instantly I felt a Hayes pity party of 1 coming right up.
This kid right here deserves the brother of the year award. For so many reasons. But he really earned it this week in-particular. Sometimes being the sibling of special needs sibling can be really cool, and other times it can really suck.
Zach was really looking forward to being with his cousins. We thought maybe we could cheer him up and do a few days at the beach but that didn't work out, and then we were going to get a cabin because Zach loves to be in the woods and as luck would have it, it rained. And all week he saw pictures of all of his friends doing really fun stuff and I could tell it bothered him - and I get it, everyone has said stuff happens, he gets it, he'll be fine; and I know he'll be fine but at the end of the day I'm not discounting his disappointment and the fact that stuff happens, but he has to sacrifice a lot, a lot of the time, so this just added fuel to my pity party.
I am so thankful for my wonderful in-laws and the sacrifices they have to make to be with our family. Because we had to cancel our trip last minute Aaron's dad, step-mom and Aunt Helen left New York on Easter Sunday at 6:30AM and arrived at a hotel here at 11:15PM. They spent one day with us before having to head back home. 
We're loved and I'm so thankful we have the most loving and supporting family all around us.
And while I'm at it, this guy right here also deserves the husband of the year award. I'm definitely no fun to be around when I'm having my pity party. I'm angry at the fact that everything has to be so hard sometimes. I'm angry that we can't be a "normal family" this week and be out doing "normal family spring break stuff", I'm angry that Zach is disappointed and I'm angry that Alex is hurting and I can't do a thing about it. I'm angry that I can't remember the last day that she was seizure free. I'm angry that we have to spend over an hour each night dealing with this new tube and our "new nightly routine", I'm angry that despite everything we've done to make this situation better for her that the tube still isn't working properly. And despite all of that Aaron just understands that I'm in that mood and he let's me have my pity party without calling me out on it, and as always, he steps right up to plate and is as hands on as ever.
I had posted this picture of Alex on Facebook while we were at one of her orthotic appointments last week - the intent of the picture was really to poke fun at her hair and saying how it was really indicative of the type of morning we had, but once I posted the picture it struck me just how much weight Alex has lost and how skinny she looks. This has been a hard year medically for her. She's been intubated 5 times this year, has had to be on strictly tube feedings for one reason or another and has been NPO more times than I can count. Additionally she's grown a lot and hormones kicked in so I really shouldn't be surprised that she's lost some weight. She's gone from 80 pounds to 66 pounds. For an average 14 year old, she should be double that. The nutritionist told us this week that all of her blenderized meals should be at least 280 calories. I think that number is actually really low and when I started calculating the calories of all of her meals they are almost double that so I'm hoping we can put a few pounds on in the next few months.
You would never guess from the big smile on her face that this picture was actually taken while we were in the Emergency Room Friday night. Again, I posted this picture on Facebook because her shirt says Life Is An Adventure - Live It. I'd say life with her is most definitely an adventure! There was some question about whether or not her new cecostomy tube had become dislodged so we had to go the ER for a dye injected x-ray to see if the tube was still in its tract. Thankfully, after 4.5 hours of sitting in the ER we were told it was still in tact. However, the tube is still not working the way it should be, so I'm really beyond frustrated about that. We have gone around and around with her GI team about the best way to get the tube working effectively and I'm feeling a little like a hamster on a wheel at the moment.
The icing on the cake last week was our appointment with her spine doctor. Unfortunately, her scoliosis has progressed and is starting to work toward her lung. His exact words to me were that he didn't want to kick me while I was down, but Alex is going to need a spinal fusion. However, he said because Alex is so frail right now she wouldn't be able to have the surgery at this point and said we had to work on her nutrition and strength before the surgery he has scheduled for August. I told him we hadn't been able to brace Alex because of all of her GI issues and ultimate surgery last month and could we just go back to the brace to try and correct some of the curve? He told me that Alex's scoliosis is not idiopathic and because it was in fact neuromuscular that she wasn't going to get better, only worse. As a side note when he first called me out to look at her x-ray the first thing I said is "Why does she have so much poop in her transverse colon?!?" He just looked at me with a funny look and I said, "Sorry, I've gotten pretty good at reading poop on x-rays!" - to which he replied "I can see that!" - anyway - once I got past that, it took all I had to hold back the tears when I looked at how crooked she's getting and how off her hips are. So, despite what he's said, I made an appointment and we went to be fitted for a new brace that will accommodate her cecostomy tube. I totally intend to do everything and anything in my power to avoid this surgery at all costs. We will begin bracing her for 23 hours a day and we are praying that the brace will start to correct. Again, I posted this picture on Facebook and I'll ask the same thing I did there - If you're reading this her dad and I simply ask that you say a prayer for her that she gains strength and that her back miraculously gets better and we can at the very least postpone surgery long enough before it further impacts her lungs. The bible says (Matthew 21:22) "And whatever you ask in prayer, you will receive, if you have faith. We have been saying a lot of prayers for her and we have faith. We just ask that over the next few months if Alex happens to come to mind that you prayer for her - specifically her back.
My mantra has always been "Live, Laugh, Love" - lately I'm having a hard time laughing so when I came across this phrase it resonated with me and I decided I'm going to give this one a whirl for while:
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