There have been so many things going on at one time I haven’t even been able to keep up with it on my blog. So get ready…this is a lot of info in one post!
A week ago…
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This girl is a trooper. She had to have sleep study done. She already sleeps with a machine! However, she has been extra tired lately. And then she started having headaches extra bad. And if her sleep is messed up then that could be a trigger for headaches. So, we repeated that darn sleep study. But because Chloe is soooooo special…she doesn’t just get to sleep there…she gets to spend the entire next day there as well!
At least in the picture below you can see where she got to lose some of her extra attachments during the daytime. They woke her up at 6 am! From that point on every two hours, they would turn her lights off, and have her try to go to sleep. However, they would only let her sleep for 30 minutes and they would wake her up. So technically every hour and half she was supposed to nap! And this girl…had no problems with napping!! She couldn’t wait for 8am, and then she couldn’t wait for 10 am. At 12 pm nap time, she did not even respond to their calls. They literally came in and woke her.
At 2 pm, she was just tired and ready to get out of there. Which we were grateful after the 2 pm nap, they let us go. She didn’t have to stay for the 4 pm nap! Hallelujah! We should hear from them this week regarding her testing!
Wednesday I left at 2:30 pm for a 9 hour trip to Arkansas! My parents were in need of a visit. My mom is declining rapidly with Alzheimer’s right now. So I spent a very stressful three days with my parents. I crammed so much in my visit that I felt overwhelmed when I left. I took my mom to the doctor. I took my dad to visit a memory care center so that he could see and get a feel for what it was like. I cleaned out my mom’s bathroom and the medicine cabinet. One would think that would be an easy job….nope….it most definitely was not!
My parents favorite sitting spot is on a bench swing out on the porch of one of their two storage buildings. Yep, they have so much stuff they have to have 2 storage buildings. A His and Her storage building! And they are leaving it all for me to clean out one day! 🙂 I didn’t say that just to be funny either! It is a true statement!
On Friday mornings, my dad takes my mom every week to get her hair done. So I know once a week she gets a clean head. And my dad told her 100 times how pretty she looked with her hair fixed on Friday. He is still smitten with her! But trust me when I say Friday is the only day she looks this pretty!
However, with as normal and as pretty as she looks here, this lady is just the shell of my mom. There is nothing about her that resembles the mom I knew. There are crazy things that happen all the time. For example,
covering some peanuts with a wet napkin. Wonder if she thought the wet napkin might make them sprout and grow leaves. Not sure. But this is simply one example of the crazy things that happen ALL the time there.
She didn’t know who I was not one time the whole time I was there. One time she said she had only boys. Very few sentences made sense. Most of them were words put together in no certain order. She doesn’t know what her last name is or how to write it. She is still able to remember her first name. She could never call my dad my name or know what relation he was to her. She was centered on seeing her mom. She missed her mama tremendously twice while I was with her. Another time, she got real upset because she thought she was moving and then later she thought my dad was moving and leaving her with me! Zine feels the same panic sometimes…I really have to stay with this woman!! LOL! The trip was the absolute worst! However, I wouldn’t have wanted anyone else to be there doing what I was doing! I used to be able to guess what she was talking about but no longer can I even do that. I did find out she had a UTI at the doctor, so I am praying that she will get better once that is cleared up…but really…better is not anywhere close to normal! There are so many things happening. On the Alzheimer’s Function Test she is entering the last level. So she is in the late stages of this horrible disease. This lady was my best friend most of my life. I love her dearly and it breaks my heart to see her mind be totally gone! We are trying to decide what our next step is. My dad has been the absolute best caretaker ever. But goodness, it is more than one person can handle! This guy is a saint…sometimes!!
I needed to run off some stress Saturday morning so I took them with me to sit on the park bench and watch Krisann play while I ran. And what do I see at the end of my run, my dad has been walking around picking up the trash at the park!!
Unfortunately, with a heart as big as his, he believes everything people say to him. He will give the shirt off of his back to anyone! With crazy people in this world, that is not always a good thing. But this man, carries a ton of stress on his shoulders. He is weary and rightfully so! And when my dad cries, this girl is always going to cry alongside her dad! And some of that happened this weekend! But I will count that as a healthy time for him to be able to do that and for me to be able to do that too!
Krisann went with me and the big kids stayed here with Zine. We divided and conquered! The big kids and Zine made it very well! The kids are so good to help Zine. And I’ve never met a teenager that didn’t like to just hang out with Zine. Krisann could not have been better. She was a near perfect angel the whole trip! She didn’t like it when her memaw got really upset and crying! She had sympathy tears! And she wanted to bring her memaw’s clothes home with her. I’m sure that was some emotional response to our time there that she just couldn’t communicate! She slept with me every night and on the trip there and back, she never needed to stop, she didn’t ask a gazillion times how much further. She just entertained herself and we listened to her Christmas musical CD at least 100 times. That’s the only music we listened to there and back so I’m pretty sure if a soloist is sick I could fill in!! Oh, how I love that girl. And although she has her issues, I continue to sit and watch and wonder what God is going to do with this child! Oh how I love her!
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Despite my worn out body, I got up and took this girl to school this morning because I am in a mode of trying to be very consistent with her! Consistency is good for this one…especially when it comes to being away from home! I skipped lunch at school today, and came home and took Zine to Cullman to see his neurologist. As usual, that took us several hours. My body rebelled to driving again today. It did NOT want to sit in that car seat and drive. Thankfully, our appt was pretty uneventful. We don’t have too many of those! I did talk to Zine’s neurologist about Chloe’s MRI and he was not too happy at all about that. As a matter of fact, he wanted us to sign release so that he could get a copy of her MRI. My concerns are definitely valid concerns in his mind! I didn’t even have to verbally speak my concerns, he was shaking his head before I could even get them all out. Thankfully, he will be glad to see Chloe and evaluate her if indeed there is scar tissue in her brain. I was relieved to hear that he would treat her even at 16! I do think he is a most wonderful doctor. We have shared many experiences with him. Even today as we got ready to leave, he wanted to know about my health! He is so caring and loving…not to mention brilliant when it comes to MS! In January, he will repeat Zine’s MRI scans and we will finalize whether Zine takes the second round of Lemtrada. Dr. L wants him to take the last treatment despite the fact that we swore we were not taking any more. We are definitely praying for great wisdom in that decision!
Whew…if you’re tired just reading all that…imagine how my body and mind feel! I am honored to be able to walk with my parents, with my husband, and with my children! However, I am feeling the need to have some down time, some quite time, some time to grieve my mom, some time to process emotions, etc. But I haven’t found that time in my schedule yet! Tomorrow, I have an appt and Chloe has an appt. In two weeks, I have to make trip to Chloe to Ohio for medical appts. there. Which means, I will keep pushing until something breaks me and everything comes crashing down. I know how this works!
But despite all that is going on in my own life, my heart is burdened tonight for the people in Haiti. And for my friend who is back at the hospital with her husband who has 102 fever tonight!
I can’t wait to share in another post a revelation God gave me today! My spirit needed that Word from Him today! And I do LOVE how He knows just how to reach my heart!
