Wednesday, February 15, 2017

Wednesday Hodgepodge {Vol. XIX}

1.       What do/did you call your grandparents? If it's something unusual tell us the story behind the name. If you're a grandparent what do your grands call you? Who chose your moniker?

I called my paternal grandparents Ma and Granddaddy. My maternal grandparents were MaEunice (later changed to Grandma) and Granddaddy. When I was younger I couldn’t talk due to a condition I had so one of the few sounds I could make was Ma. I called my maternal grandma Ma + her first name (Eunice) until I realized all my cousins just called her Grandma; then I switched. 

2. Ever taken a road trip along the California Coast? If so what was the highlight of your trek? If not, any desire to do so? If you were to take a trip along the California Coast what's one attraction you'd have on your must-see list?

I have never been to California. The one place I have always wanted to visit in California is Alcatraz in San Francisco. 

3. What are three things you don't know how to do?

Dance, make a coconut pie, and draw. 

4. Tom Peters is quoted as saying, 'Celebrate what you want to see more of.' If that's true what will you celebrate and more importantly, how will you celebrate?

Unity. Not sure how I would celebrate this. I feel like our nation is broken and may not ever feel unity again. 

5. Thursday (February 16) is National Almond Day. Do you like almonds? Which would you prefer-an Almond Joy or a macaron? What's something you make that calls for almonds?

I sometimes eat roasted almonds as a snack. That and almond milk are the extent of my almond liking.

6. What does Saturday morning look like at your house?

Wake up a little before 6 am and take my daughter to dialysis. Come home and watch TV or read until it is time to go pick her up. Then sometimes I do grocery shopping or sometimes we just stay home and relax or work around the house. 

7. Share with us a favorite book you've read this winter.

Vanished by T.K. Leigh is probably my favorite that I have read so far this winter.

8.  Insert your own random thought here.

I am ready for warm weather to come around and stay. I think my perfect climate is a minimum of 70*F year round. Here lately we have a couple of 70* days and then a few 30* days and then a couple more 70* days; it’s gotten old rather quickly. 

Thursday, February 9, 2017

When You Can't Fix It

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** I am sorry about the font. No matter how much I change it, it reverts back to this. **

When you become a parent you want to fix all that is wrong with your child. When they are sick, you want to make them feel better. When they hurt, you want to take the pain away. And when they are scared, you want to reassure them that there is nothing to be scared of. But, sometimes, that's just not possible. There are times you can't make them better or take the pain away, or are so scared that you can't reassure them 100%. That has been my life since November 19, 2016. 

Our oldest daughter turned 18 earlier in 2016 but remains living with us because she acknowledges that she cannot make it in the world alone right now. Plus, she's still finishing high school. She had been complaining of some common symptoms such as occasional tiredness, nausea, etc but insisted that she was fine. On November 19th, my husband was shampooing our living room carpet when I realized that she was really weak and fatigued. I finally convinced her to go to the emergency room. She could barely stand while I was checking her in. Since the ER was slightly packed, their policy is to have blood work done before you're called back so the doctor can have the results ready. Not long after she came back from having her blood drawn, a nurse came to the waiting room with a wheel chair. They wheeled her to the back while trying to explain what the urgency was to us. The normal hemoglobin level for her age is between 12-15; hers was a 4. They explained that they were giving her 2 units of blood via transfusion. After some back and forth, we were then told that she was in kidney failure. The nephrologist came in and began explaining creatinine to us. A normal level is 0.57 - 1. Our daughter's was 32.5. They moved her to the ICU for careful observation. She also received another 2 units of blood. By the morning of November 21st, her creatinine had gone down to 26 on its own. The nephrologist told us that dialysis was the only option at this point. She went in for a permcath and began dialysis that evening. She had dialysis again on the 22nd and 23rd. They deemed her healthy enough to come home on the 23rd. At this point, she had to be on dialysis three times a week. 

Since being discharged, she has had another 3 day hospital stay for high potassium level, several ER visits, had her permcath reinserted, and had minor surgery to have a fistula done. She needs a kidney transplant. We are working on getting her on the list; the checklist is complicated. She still has dialysis 3 times a week, on the renal diet, and on a medication to help regulate the phosphorus in her body. 

My daughter is only 18 and has to fight harder than any 18 year old should. Now, to answer the most common question I get: How did this happen? Back when my daughter was around 7 years old, she was diagnosed with Henoch Schonlein Purpura (HSP). I wasn't told much about this condition when she was diagnosed; none of the doctors then had ever SEEN a case of it. We were briefly told that the condition could potentially attack her kidneys or other organs. She saw a pediatric nephrologist when she was younger and he gave her a clean bill of health. Unfortunately, a person's creatinine level is not something that would be checked at a typical well - visit. When we first moved to a new area a few years ago, I did take her in to the local children's ER for what turned out to be a kidney infection. Part of me wonders if that ER had checked her creatinine, would we have found out about her kidney disease in its earlier stages? I did a quick research on HSP and learned that only 5% of those diagnosed with it develop kidney disease and only 1% have kidney failure. 

My child is facing so much in her short life. And it devastates me that I can't fix it.  

Wednesday, February 8, 2017

Wednesday Hodgepodge {Vol. XVIII}

1. What's the last thing you did that someone else thought was super? 

I'm not really sure. I get told all the time that just being a homeschooling mommy to 7 is super enough. My kids thought the fact I just painted my entire master bathroom by myself was super. 

2. The last thing you ate that tasted superb? 

Hawaiian Porkchops. It's a recipe I found while searching for one my daughter could have. It's a porkchop topped with pineapple ring, red onion ring, green pepper ring, and a pat of butter. It's wrapped in a foil packet and baked. They tasted so good. Recipe found here

3. Supersensitive, superstitious, superwoman, superambitious, supercilious, supervisor, superficial...pick a super word from the list and tell us how it relates to your life in some way recently or currently. 

Definitely supersensitive. Politics is taking a toll on me. 

4. Do you love easily? If you're comfortable doing so, explain why you think that is.

No. My past is filled with pain and disappointment so I keep myself guarded.  

5. Valentine's Day lands on a Tuesday this year. Will you mark the day in some way? If you're celebrating with a dinner out somewhere will it be on Tuesday or will you celebrate over the weekend? 

I do not celebrate Valentine's Day. 

6. What's something you are loving right now? 

Binge watching shows. Watching new shows. Loving Scandal, Designated Survivor, Emerald City, 24:Legacy, The Haves and the Have Nots, and Too Close to Home. Cannot wait until The Walking Dead comes back on Sunday. 

7. Write a three word (or less) phrase you'd like to see on a Valentine candy heart.  

Mine Always. It's always nice to feel wanted and loved. 

8.  Insert your own random thought here. 

I've lived in this house for a year. The master bathroom was a spring green color with an ivy wallpaper border. It was ugly for a bathroom and I hated it. I bought all the stuff several months ago to redecorate it. After two days of painting, it is now a tan/gray/off white color (Indian Muslin to be exact), border is gone, and it is now decorated with my seashell theme. There's no window in my master bath so there's no natural light. The new paint makes it look so much brighter and bigger. I am very happy with how it turned out.