Showers are extremely tiring for Zine. Zine is eating very little. But has gotten a bit better about eating since we've been home. Now what I fixed for dinner the past two nights didn't set well with him. So I'm learning he needs really really bland foods right now and no fat! And I on the other hand.....need lots of food with lots of fat!!! Despite my good efforts to pay attention to my food I digressed greatly over the past two weeks. From Ohio to Madison Hospital it has done a number with my eating! Ugh! I feel like I'm having to start all over again! I am super duper discouraged about that. But that's what got me to this place...stress. I'm a no eater when I'm stressed.
We were having a hard time getting Zine in the bed without hurting him. And as I looked at our hospital bed, I knew what would help. So with a phone call, I was able to get half rails! And we have lowered our trapeze bar so he doesn't have to reach up so high. And I'm learning to sit the bed up before Zine moves over in it. We are learning some tricks to making it easier. Zine is better with his transfers today. He naps twice today so we've had several chances to practice those transfers. We are back to the transfer board most of the time. But he's improved as we've transferred. This morning using the gait belt he even stood up for a few seconds.
I did learn something Friday! I was told at rehab we would be renting our hospital bed. However, I discovered today...we actually bought the bed! It is ours...after I pay my bill that I received from them. That was not what was told to me. I was not happy. I talked to three different people and finally talked to the general manager and no one can tell me how it got like that! Rentals are almost always the way they are done. I told the lady if I was going to purchase the dog gone bed, I sure would not have bought a crappy mattress that we've had to put foam over just to be able to lay on it! So...I had to make a decision...to keep the hospital bed or to have them work with insurance at repaying insurance. But the General Manager asked if we would need it in future because her advice was to keep it and not send it back. Now, I have to wonder if that was not a God thing. It was NOT supposed to be this way. This was a temporary thing. Or so we thought. But maybe God knew neither Zine nor I would ever want to move to a hospital bed so maybe he made it easy for us! We are currently trying to decide what we are going to do...Krisann's residence is in my room right now and I don't know if I will ever succeed at getting her back to her room. But I can't do that too well as long as I have her bed. So...we are praying about the decisions to make regarding our sleeping arrangements. I think I know the best answer but dog gone it, I just don't want us to go there. But I really, really believe God was in the details that we have a hospital bed! And on top of that, because I didn't make the General Manager go to all that work to reimburse my insurance company, she sent me a brand new upgraded mattress. (Of course, it couldn't get any worse than what we had!)
Zine has started getting choked on liquids at times. He choked twice in the hospital on some juice. And tonight he got choked again on some water. We do not like that!! That does happen with MS! They ask us every time if he's having swallowing difficulties! So I'm afraid the answer is now yes. Praying that is not the case but Zine has already said that's what it is, and I'm beginning to think it might be.
I do not think I can adequately put in words how terribly sad we are right now. And I know I can not adequately express how alone we feel! I think our house could be full of people and we'd still feel alone. We feel like no one gets it. And in reality I know no one can unless you have walked a similar path. I would have never gotten it before now! And we are completely different people! You don't go through what we've gone through and not be changed. So sometimes I think our social skills have been impacted greatly! Just praying that God can work in our emotional status and in the depths of our hearts to bring peace! I love this definition of peace...peace does not mean to be in a place where there is no noise, trouble or hard work, it means to be in the midst of all those things and still be calm in your heart. We need a calm in our heart in the midst of all we're going through.
We are grateful to some organizing fairies who have made a huge change in my house while I have been away! To think I used to be organized and every item had a home...long gone are those days! But it is super nice for things to be organized and for Krisann to have boxes labeled so she knows where crayons go, etc. Why did I not think of that?? Oh how I am trying to keep it organized and working on teaching her to keep her stuff organized. And this week while we were gone, even the big kids worked hard at keeping it picked up! YAY!!! And the Smith kids were blessed with some Dunkin Donuts a couple of days this week and we all know how much Krisann loves those!
Our children have turned into adults overnight! And they have bonded in ways that they probably would have never bonded had we not gone through what we've been through! And for that bonding between them I am grateful! They said Krisann was a near angel this week. And I listen to them talk and I hear the love that has grown in their hearts!
We had to buy a new refrigerator not too long ago! And now our oven is on the blink, and our lawn mower is broke. So...I think I'm about to see how good of a mechanic and appliance repair woman I can be! It's amazing how little things like this can be so frustrating when your emotions are on edge. Our medical bills are coming in like crazy and they make my stomach churn everytime I get one. It's crazy!!
There's so much more I could say but I can never share all the details of life! I would be here typing forever! But for now...we are home. And we would prefer to stay away from hospitals for now! It's terrible when the ER doctor and nurses know who you are. So can we not do this again for awhile? We love Madison Hospital but we'd just like to take them some goodies and not live with them!!
Thanks for your prayers this week. It has definitely not been a fun week! And definitely a week full of emotion.
Oh, Karen, my heart cries out for you & your family to Almighty God! I am so, so sorry for what you are going through now!
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