Thursday, October 8, 2015

Christian: One Month Old

I wanted to make a quick post about sweet Christian. He is now one month old, as of yesterday. The time has gone quickly! He is adorable and doesn't cry much, except when he's hungry, needs a diaper change or when he has gas. Other than that, he is very happy and mellow. He's started smiling in the past few days, which is a very sweet site to behold. It's SO nice to have a nephew living close by that I'm able to see so often and watch grow up. I love him!
*Chan crocheted the beautiful baby afghan that Christian is lying on in these pictures. She did a great job!

Tuesday, October 6, 2015

Mom's birthday

My mom's birthday was last Friday. We didn't do anything super exciting to celebrate, but it was just great to spend another day with my BFF. We ran a lot of errands…I got a flu shot, I went to the dollar store to pick out the Halloween cards to send to my nieces and nephews, I had an appointment at the eye doctor and then afterwards my mom and I went out for an early dinner at Popeyes. For years I've seen their commercials on TV, and I've always wanted to eat there because their food always looks so good on TV! There has never been a Popeyes restaurant close to my house, but one recently opened up about 15 minutes away, so we decided to go.

Chandra was able to meet us there, and she brought Christian with her. The first picture below is what my mom got (chicken, red beans and rice and a biscuit) and below that is what I got (three chicken tenders, Cajun fries and a biscuit). We also tried a variety of the sauces that Popeyes offers. We thought the food was pretty good. I liked the chicken, but next time I would probably just get the mild chicken instead of the spicy, since most of the sauces were spicey enough.
This sweet little guy was so good and just slept the entire time we were there.
I'm so grateful that I have such a great mom. She takes excellent care of mesomething I'm extremely grateful for, especially since SO many people in my same situation can't say the same. Our life probably doesn't seem very exciting to most people, but not only do we make the best of it, we actually have a lot of fun together, even while doing the monotonous daily caregiving/care receiving, and not-so-fun things like going to doctor's appointments. We have a great life, mostly because we get to spend our lives with each other. Happy birthday, Mom!

Tuesday, September 29, 2015

Insomnia No More

Ever since I was a little girl, I've always had trouble sleeping. I'd go to bed, and it would take me forever to fall asleep. Same thing when I was a teenager and young adult. After my accident I used to take Ambien or Benadryl to help me sleep at night, but both of those drugs lose their effectiveness if you take them too many days in a row. Plus, I wasn't crazy about being dependent on them to sleep, so I stopped taking them.

So now I was back to having sleep in problems again. It would either take me hours to fall asleep, or I would fall asleep without too much trouble, only to wake up a few hours later, and then be awake for two, three or even four hours. It was so frustrating because I desperately wanted to sleep, but I'd be wide awake. (And I couldn't even get out of bed and read or watch TV.) I'd wake up feeling exhausted the next morning, which is never a good feeling. So frustrating!

Another irritating sleep problem is that so many of the medications I take cause drowsiness or tiredness. This is a really annoying side effect, because when I'm awake I want to be able to work on my computer and get stuff done, and I hate feeling so tired that I have to stop and sleep. As Sweet Brown says, "Ain't nobody got time for that!" It seems like so often I get really tired between the hours of 10 AM and noon, and if I don't stop and sleep for a bit, I can't accomplish anything! I've even been known to fall asleep in public (like church), even though I try so hard to stay awake. Why is it that I can't sleep when I want to, yet I feel tired when I want to be awake?!

I've heard some people take melatonin to help them sleep, so I asked my doctor about it when I went in for my appointment this past July. She said I should give it a try, so I had my mom stop at Target on the way home so that we could get some. The melatonin has made such a big difference! Now it only takes me about 30 minutes to fall asleep, instead of a couple hours like it used to. I just take one of the melatonin pills a few hours before I go to bed. It doesn't really make me feel tired, but when I go to bed I'm able to fall asleep relatively quickly and stay asleep through the night. As someone who has experienced insomnia my entire life, this is a HUGE deal. I'm so glad that I've finally found something that helps me get a good night's sleep that isn't addictive. It really doesn't have any downsides, and unlike Ambien or Benadryl, you can take melatonin night after night without your body habituating to it. Hallelujah!
Melatonin comes in 1 mg, 3 mg or 5 mg tablets. I take the 3 mg tablets, and those work just fine for me.

Monday, September 14, 2015

Chan's Baby Arrives

My sister Chandra had her baby last Monday, September 7. How cool is it that she had her baby on her exact due date, which also happened to be Labor Day?! She woke up the day before at 7 AM and was having contractions. They weren't too bad, so she decided to go to church. The contractions got a little more painful and closer together throughout the day, but they were manageable. Her water broke around 11 PM that night, so she took a shower, ate a bowl of Ramen (priorities, of course!), and then she and her boyfriend headed to the hospital.

I went to bed around the time they left for the hospital, and I naïvely expected there to be a baby by the time I got up the next morning. I thought, "Oh good, Chan will have her baby tonight, and then Mom and I will be able to go visit Chandra and the baby tomorrow." Well, it took a lot longer for the baby to arrive than I was expecting.

Chandra had been planning on trying to have her baby naturally. By around 2 PM she was still only dilated to 3 cm, and the nurse told her that it could easily take another six hours (or more) for the baby to arrive. Poor Chan was so exhausted since she'd gotten very little sleep since getting up at 7 AM the previous day, so she decided to get an epidural. No shame in that! By around 6 PM, Chandra was still only dilated to 4 cm, so her doctor thought it would be best to do a C-section, since it had been close to 20 hours since her had water broken. Chandra was prepped for the C-section and then taken to the OR.

The baby was born at 7:37 PM, and he weighed 7 lbs. 13 oz. and was 20¼ inches long. Chandra and her boyfriend, Joe, picked the name Christian Joseph for their baby. I've always liked the name Christian, so I approved. :)

My mom and I went to the hospital to visit Chandra and the baby the next day. I couldn't believe how well Chandra was doing just 18 hours after being cut open. She was even up walking around a little bit. That's pretty impressive since a C-section is major surgery! She showed us her incision and I couldn't even see it. It had just been glued shut, and it wasn't even covered with a dressing. It was great to see Chandra doing so well.

Christian is a really cute baby. Of course, he was really sleepy, but that was perfect for me, because that way I could just hold him on my lap without having him wiggle around, which is painful. He'll be too big and wiggly for me to hold on my lap before I know it, so I just enjoyed holding him.
Here's Christian at one week-old, and all ready for bed!

Saturday, September 12, 2015

"Ghost Boy"

My mom and I recently finished reading a great book called Ghost Boy by Martin Pistorius. This is the true story of Martin, a boy who got a mystery illness when he was 12 years old. He was sent home from school with flu-like symptoms and never returned. His muscles weakened, he lost the ability to do everything and he was in a vegetative state. Doctors weren't sure what to make of Martin's situation (which was later diagnosed as cryptococcal meningitis), and doctors told his parents he would be dead within a few years. Although Martin was in a "locked-in" state, he did not die.

Miraculously, after about four years of being unresponsive, Martin's brain "woke up" and he slowly regained consciousness. Except nobody realized that the lights had come back on in Martin's brain since he had no way of letting people know. Martin was literally trapped inside his body, and he stayed this way for the next eight years (from age 16 to 24). He lived at home where his parents (primarily his father) cared for him, and his parents took him to a care facility during the day while they worked. Martin spent his days watching episodes of Barney at this facility. Imagine watching repeat episodes of Barney day after day. That would be enough to drive anyone mad!
Martin wasn't able to hold his head up, and he did a lot of drooling, hence the bib. He would sit in his wheelchair for hours on end, and was often in excruciating pain from sitting in the same position for too long.
Martin was privy to a lot of interesting conversations during those eight years that he was trapped inside his body, since people assumed he wasn't capable of understanding them. He also had some caregivers that were downright cruel to him. When his parents would travel, they would take Martin to a care facility where he could stay overnight. One of the female employees sexually molested Martin on a regular basis, and would rape him when she had him alone. It doesn't get more despicable than preying on someone who is helpless. Not all of the caretakers were bad, though. Martin wrote about Virna, a caregiver who treated Martin with dignity. She would talk to Martin and would carry on conversations with him, even though he wasn't capable of responding. She would also make eye contact with him while she talked to him, and she saw recognition in Martin's eyes and noticed that he could use his eyes to respond to the things she said. Finally, someone realized that Martin was more than just an empty shell!

Martin was assessed, and the assessment confirmed that he WAS able to understand and follow commands. In the next several years Martin's life changed for the better in some significant ways. He got a computer that enabled him to communicate with others. What a difference it makes when you can actually communicate your thoughts and needs to others! Martin began to regain some of the strength in his weak muscles, too, and he regained some of his upper body functions.
When Martin regained consciousness, he had no recollection of his life before getting sick, and he had so much schooling to make up, too. He ended up graduating from high school and college.
In 2008, Martin met a young woman named Joanna while Skyping with his sister Kim, and the two of them hit it off. Although Martin doesn't have the ability to speak, they began communicating on a regular basis through Skype, texts and email. Martin and Joanna both grew up in South Africa (although they never knew each other), but by this time Joanna was living and working in the UK. Long story short, the two of them fell in love and they got married in 2009 (and Martin moved to the UK). This is where the book ended, and I was so happy for Martin, especially after all he had been through. His book truly had a happy ending, and left me feeling so happy and inspired. Even though Martin went through so much during those years when he was trapped in his body, and even though he still has a very challenging life, he's never been bitter or angry at God. In fact, he said that God was his constant companion amidst all of his pain and suffering, and the one that sustained him through everything.
Martin is able to smile and make a few facial movements, but he still can't speak and relies on assistive technology in order to communicate. He can use his arms and hands to do some things, but he doesn't have full use of his them, and he doesn't have the ability to stand/walk, either. He is a lot better off than he was at his worst, though, and I'm sure he is grateful for every little thing he can do now that once wasn't possible.
Ghost Boy was a great book, and I could relate to Martin's situation in a lot of ways. This book is definitely worth reading, even if you can't relate to being disabled. It will probably make your limitations, frustrations and pains seem light in comparison, and will make you appreciate what you do have!
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