Laughing

I LOVE to laugh. I pray my kids will have a good sense of humor and enjoy laughing; I think they do. Walter and I laugh all the time. I will admit that even at times of struggling most in our marriage, I missed laughing with him most.

Last night my sister pushed and pushed me to join her for a sister date night. Our friend Laura and her sister (her twin! I enjoy watching her with her identical twin because they remind me of my girls and I get a glimpse of how Liz and Kate may be when they are older) went too. We saw a totally inappropriate, crude, silly, immature movie....and it made me laugh for two hours straight.

Today I have laughed.....
Jackson is dressed in his board shorts and a beanie. Why?!
Kaitlin came to me upset that Elizabeth wasn't helping with the chore of cleaning their room. "She is just dancing around, doing the "Hooky Pooky! Make her stop!" I asked her to repeat what Liz was doing (knowing full-well she meant Hokie Pokie) and again Katie said "The Hooky Pooky!"....is it wrong that I was dying of laughter inside and I did NOT correct her?
Liz asked me for $329, as though she was asking for a dollar. Straight faced and dead serious she asked me for it. When I asked her why she needed $329, she said "Alright, $299 will do it." I told her she would have to earn it, to which she said she would. She then asked how long it would take and when I told her that it would take a LONG time to earn that much, her response was "yeah, um that's not going to work for me."

....and I will giggle again when Walt gets home from work tonight and I repeat this all to him.

I'm Pooped!

I have been surrounded with poop so much in the last 6 weeks, I could scream! I have talked about it, examined it and taken enough samples of it to last me a lifetime.
It is true, Elizabeth has CDiff-AGAIN! Or perhaps it never really went away from her last bout in late April. Either way, the infection is there. This is what she was JUST hospitalized for. She also took a larger dose of antibiotics for a longer than normally prescribed amount of time. And still, it is there, taking residence in her poor intestines three weeks later. Grrr!!
Last Thursday I took a stool sample to the lab as is protocol. With CDiff, you take the course of antibiotic, wait a week and then take a stool sample in for testing to prove that the CDiff has cleared. Anyway, I took it in last Thursday. By Saturday, Liz started complaining of stomach pain again and saying that she thought she thought the CDiff was back. Yesterday, the nurse called to tell me that results were in and Liz is testing positive for it. So frustrating!!! Of course, Liz is her doctor's only patient to have recurring CDiff. Poor baby.
Normally, she would start on a dose of Flagyl, an antibiotic used to treat CDiff. With her last course of Flagyl, used last month to treat the CDiff it became obvious that she is allergic to it. Frustrating because the 4 other times she as had the infection, she did fine on the Flagyl. I have learned, though, that your body may not show an allergy or intolerance to a medication at the first (or second or third...) course of treatment. This is also frustrating because there are only a few drugs used to cure CDiff. She will start on Vancomycin and then go to Cholestyramine. Hopefully her body will react to the medication over the next 24-36 hours. The next step would be admitting her to start iv antibiotics. Liz's Gastroenterologist is trying hard to treat her as an Outpatient, which I appreciate. We'll see how she does...we DO NOT want to go back to the hospital!

PneumoniBLAH

Jackson and I think pneumonia should be called "pneumoniBLAH"

It is true, my poor little guy is sick. I am glad I took him in yesterday as I had no idea he was so sick. He'd had a cold about 10 days ago, then a fever starting about a week ago and his cough only got worse. I'd been giving him breathing treatments the whole week. Still, he has been more sick than this in the past, so I figured at the worst, he may have another sinus infection. And, in yet another move that nominates me for Mom of the Year, I boo-hoo'd him last week when he told me a handful of times that his heart hurt. Seriously! I brushed it off as heartburn, as he has been drinking a lot of orange juice. Ahh, mommy guilt is the best!
Anyway, he had two injections of an antibiotic yesterday at the doctor's office and is on antibiotics at home. We are praying his gut holds up and he does not get CDiff again. Remember, he had CDiff in January after being on antibiotics for a sinus infection. The doctor did not want to put him on an antibiotic for at least a year but we have no choice with the pneumonia. Blah! Add in my concern of Elizabeth getting sick, and I am a sanitizing freak!

I will admit that I had a good, exhausted cry last night in my car. I am so tired of doctors and the hospital and xrays. I just want a healthy household... and some sleep! Good thing Kaitlin is great and so are Walt and myself! Megan reminded me that because Liz gets sick so often with her medical issues, this just feels like a lot. I KNOW this will pass.

Here's to hoping Jackson is able to sleep at least a few hours tonight and he is better tomorrow. Pneumoniblah stinks!

Serve and be grateful

"TO WHOM MUCH IS GIVEN, MUCH IS REQUIRED"

One of my favorites! We have this up in the house in several places, as I believe it and I want the kids to see the words and come to believe, too.

The song that is playing now is another favorite of mine.... "greater things have yet to come and greater things are still to be done in this city. We believe in You God."

Today, in Long Beach, many gathered to participate in Serve The City. The girls and I decided to serve alongside other members from our church at the COA. The COA provides meals, clothing and groceries to anyone at their doorstep. We spent the morning sorting (and sorting and sorting...) and hanging clothes. Others in our group (heeeyyy Nickie and Bear!) did fix-it jobs and some major deep cleaning.

It is natural for me to want to serve; that's just how I am made. I realize that my children may not naturally be driven to do that - though I see it in the girls-. Still, it is important to me that they do for others and learn that service without anything in return(other than the wonderful feeling that comes from helping others) is what we are called to do. I started with the kids early and I can see that service to others, kindness and giving without expectation has become something they easily embrace and want to make a part of their lives.

This morning's project was a huge lesson/reminder for the girls. Their walk-in closet is a disaster! I can supervise them cleaning it one weekend, and by the following Saturday, it is a mess; a heap of clothes on the floor. A constant battle between us. This morning, as they sorted through bags and boxes of used clothing and hung the pieces up for someone else they know will be grateful to get to chose and take home, I know their little (big) minds were thinking.

After serving, I asked the girls if they had any thoughts about what we had just done. Liz said she was "emotional" and Kaitlin said " I think we have a lot even thought we don't have the most like some people. We should feel lucky."
Exactly, my Kate, to whom much is given, much is required. We have (so)much so we should give much. I pray my kids will always know this and always want to live a life of service. Love your neighbors as yourself, it is as simple as that.
"It is more blessed to give than receive"- Acts 20:35

Got Cdiff?

All smiles as she gets to be back at school!!


After three long weeks, Liz went back to school today! Yay!! Miss Social got a warm welcome from her friends and was glowing as I drove away. I checked in on her at recess and she said she was feeling well enough to stay. Once school was over and I picked her up, she said she was dizzy and tired, but had a great day. Hooray!

I have been bleaching and cleaning up behind Elizabeth like a madwoman. CDiff is extremely contagious and I have been a crazy person trying to keep it from spreading. Holly once sent me a flair button (I think it was Holly. Or maybe Paul)that said "Got CDiff?" with little germ-like characters floating around. Not funny! Actually, once I get thru this latest bought of it with her, it will be very funny again. Cdiff isn't cleaned by alcohol or sanitizers. It's hot water and bleach to kill those germs!

She has been itchy for the last few days and it's only getting worse, so she'll start on an oral steroid. She is probably having a reaction to the antibiotic she has been taking for the CDiff. Luckily, today is her last dose after 14 days, so she should get some relief from the itching soon. In the meanwhile, she is making the rest of us scratch just watching her.

Liz saw her GI doc this week. He talked with me about having presented a bit of her case to other doctors at a meeting. Radiologists have always noted that Liz has sludge in her gallbladder. Though this does not cause much of her pain, it may be responsible for some of it, so she is going to start on an medication that mimics the bile acid we all have naturally in our bodies. This should help move the sludge out. Sounds yummy, doesn't it?
She'll have stool samples tested again on Monday to make sure her CDiff has cleared and also see if she has nay white cells in the stool. We'll test some more for blood as well.
From a GI standpoint, we'll just continue to monitor her. She should not have antibiotics for a LONG time, as that can cause the CDiff easily for her.

It has been a long month and I am grateful that she seems to be getting back to normal. Grateful...and scratching : )

May Day!!

Today is May Day!! I was excited to help the kids decorate paper cones and then fill them with flowers, to hang on the doorknobs of people they chose. It was fun to hear them speak of each person they'd chosen and hear them talk about how surprised they thought the recipients would be to open the door and find flowers.
The kids will never be undercover cops or the best toilet paper-ers (is that a word?) as they were so loud in their flip-flops and constant giggles. They get big points for always embracing the fun and it is a happy tradition. Yay for May (and flowers and smiles)!








The kids had fun decorating the cones and filling them with flowers. I loved that they talked about each person who they planned to receive the flowers as they were filling them.











So exciting for them to hang the cones, knock and then....




turn around and run to the car!



The three of us who were still in the car at each stop would giggle and giggle as we watched our partner run. So fun!




Jackson got a kick out of the whole thing. This is the same kid who, during our Caroling Party two years ago, would hand a person at each home we sang at a candy cane while telling them "trick or treat!" and expect candy in return. Thankfully, he is the 3rd kid and just goes with the flow during every silly thing we do.

Circles

First of all, I haven't been blogging as much as I was in the past. I found out that people who I never expected would know about my blog not only know of it, but are reading it. This makes me feel vulnerable. Too vulnerable, perhaps. It is much easier journaling when I don't know who is reading this; when I can write assuming no one is reading it. I am sensitive to judgement and feeling exposed.
Some are asking for an update on Liz. She is home and doing better. She is still not well, as she is fighting the infection. She is very tired, which she admits- she NEVER admits being tired. Or, I should say, she never used to be tired. Fighting such a nasty infection can make anyone tired. Add in her trying to get back to her normal activity level quickly after 8 days of virtually zero activity, and also being on a medication that can cause drowsiness, you can get a picture of how tired she is.
She was out of a diaper for the first time today. She had to use them because she wasn't making it to the bathroom in time - part of CDiff. She wouldn't appreciate me sharing this with anyone. Having said that, she at least has had to wear them before after surgeries or previous bouts of CDiff, so it wasn't a bother to her to be in them this week. Her little bum can still fit into size 4/5 Pull-ups, so there was no trip to the store needed. I just got out the unused stash I had leftover from Jackson and pretended like it wasn't a huge deal. Sweet girl.
She had two nights of fevers this week, which had been gone for about 6 days, so yesterday the doctor asked to see her. She had labs done and the GREAT news is that her platelets and hemoglobin have gone up! A big deal, as they were still low on the day of discharge from the hospital and since she'd been having bleeding and both counts have to do with bleeding, it was important we saw the counts going up rather than down. She is excited because her platelets are in normal range and this means she can ride her bike and scooter again (they had been low enough that the doctors told us she had to keep both feet on the ground until they went up).
She has 9 days left on the antibiotic. Today I tried taking her off of her Zofran - the anti-nausea med. she has also been taking-, but that proved to not be a good idea, so she's back on it.
So the plan is to stay on the meds, let the antibiotics do their work and have her rest. Hopefully she'll be well enough for at least a half day on Monday of school. She will see her GI doc on Thursday and at that point he'll talk to us about a plan to try and keep her gut healthy so she doesn't get yet another case of CDiff.

I am exhausted! Physically and emotionally. As I expressed to some, Walter and I have had so much stress as the medical bills seem to be drowning us. I had the nerve to ask Walter how much we owe in medical bills for Elizabeth (bills that have accumulated) and I was shocked at the amount. He estimates - without sitting down and adding up the bills we know of and the ones that are sitting in Collections- that the number is around $20,000. We make enough to pay for our insurance and for a horrible illness or hospitalization to occur and us be able to pay for. But, 10 years into Elizabeth's health issues, it is just too much. I know the medical bills upset him the most as he is the provider for our family. Also, those who know him know how frugal he is. To be in debt over something we cannot control drives him crazy. It is just so hard to get ahead of it because it doesn't stop. Co pays alone are $45 for office visits. Her labs and procedures mount in cost. Even with insurance the bills add up. Sigh. For years it has been a burden that Walt and I don't talk about with others because it is just too overwhelming. This week, though, a dear friend talked openly with me about it and so I was forced to have another of the conversations with Walt that we both dread. On Monday I will try, once again, to find a loophole that will allow Elizabeth to qualify for CCS, a medical coverage option for children who qualify either by income (we won't qualify based on the fact we make too much) or diagnosis. It just feels like going in circles.

On a happier note, after Liz's appointment yesterday I took her to Luan's Dress Shop to choose a dress for her Most Inspiring Student dinner/reception. Of course she was beautiful in the dresses she tried on and I started to cry as I watched her twirl, smiling, in the dress she chose. She's been going in her own cirlces of feeling well and then being sick and rounds of tests and appointments for so long...and still, she twirls.
How can I not do the same, or at least try to.