These Boots

Only Elizabeth Claire would go to the hospital wheezing, bleeding, in pain, tired and just plain sick....dressed like this. I swear, this kid was born looking for the nearest red carpet or runway. Once again, those who doubt God and go for the whole science reason for our being here, I will say to look at my twins. Same DNA, same fingerprints, same environment at the same time, yet they were born different; they were born who they are. And Liz was born addicted to fashion and probably wondering why in the heck she wasn't dressed in a great jean or shoe as she entered this wonderful world. Anyway, those boots were just too much today and she giggled as I sang "These Boots Were Made For Walking'" to her. Alright, I will admit that I may have added my own take on the song and inserted a sentence that may have gone something like "these boots are made for kicking CDiff's you-know-what!" I am not saying I did. But maybe. Probably.


Liz is sick. Tuesday she left school early with a horrible sore throat, fever, and just feeling bad. I took her to the pediatrician Wednesday morning because I saw white spots in her throat and with Liz we have to watch her super close because she can't be on antibiotics right now if we can avoid it at all. Her doctor thinks she has a respiratory virus again and we'll watch her for the next few days. Her chest hurts because air isn't moving as it should through her lungs so we upped her breathing treatments to four times a day. We're doing sinus rinses daily to help clear her out so that we can avoid another sinus infection (which would require antibiotics, which would be awful). Short of putting her in a bubble, we can't do much. So, there's that.
And then there's this.....
We think her CDiff was not cured by the last round of antibiotics as we'd hoped and that it is beginning to rage, causing the colitis again. She's had some blood over the past few days in her stool but last night, as I was running out to two meetings, she called me to the bathroom and she'd had a lot of bleeding. I thought I was going to throw up I was so upset.
Today we went to her GI doctor and he examined her which resulted in her admitting to a pain level of 7 when he pressed on her stomach. Liz is usually not as honest as we'd like her to be, hiding how much pain she is in or how bad she feels. I'd hide it to if I were her.
I'll take stool samples to the lab tomorrow and we'll see what those show. The doctor talked with me about cases where the test is a false negative, so we'll have to follow that road perhaps if these labs come back negative. UCLA is being so we can get back on the fecal transplant "train"...it is a process.
She's lost a pound in just 10 days, which may not sound like much, but for her is huge. It took her a lot of work to gain weight, so losing it is a bummer.

This afternoon she told me she does not want to die and that she knows she probably will if she has the transplant. Oh my. I gasped, actually. She is sure, she says, because she has heard us all talk about how new the procedure is and how rarely it has been done in the States. I asked her to remember what else she has heard us all discuss...that it is an easy procedure and while there are risks, riding a bike is risky. Life is risky in general and she can't be worried about dying. I asked her to remember how I have always been so honest with her about everything medical and she needs to feel in control as much as she can, so that she will have all of her concerns addressed before I "sign the papers" and I will allow her to sign them too. She nodded, said 'we'll see" and then asked for a kitty.
Sweet girl.

Update

I realize it has been a while since I've updated on Liz. The reason for that is mixed.... For one thing, it is nice not to talk about the hospital, infection or illness for a while. Though it is obviously necessary to talk about those things as we work to get Liz well, it is a bummer to have to have it all as so much a part of our days. I love the times it is not..... and then I am struck with the reality that although this is not who Liz is - it is not who we are- it is a part of our life for right now.
The note above is an example of that. Kate and Lizzie's teacher had them write a note for their parents, to be left on their desk for us to find during Back to School Night. It is clear what is on Liz's mind.

Walter came to me upset the other night because he overheard the girls talking and Liz said "Mom wants us to go away to college. You can go away for us, but I need to stay here and go to LB State so I can be close to my doctors!" No matter how much we point out that she will be well by then, that she can do anything she wants, the reality is that Liz has her health on her mind. She is getting too old to distract from it all, and when she isn't feeling well she talks more and more about her health. It is such a fine line of letting her express herself and have power over her feelings about it all, while balancing her not letting this consume her. I have always said I will keel over before I let this become who she is. I just won't allow her to have the mentality that she is a "sick kid".

The update-

Two days before her colonoscopy and endocscopy, Liz had labs done on her stool. That stool sample showed no CDiff. She is still in pain and having abnormal stool with some bleeding, so the doctors aren't prepared to say yet that the CDiff is gone. She'll be tested again later this week or next. Things with the Fecal Transplant are on-hold while we wait. It is amazing to think that the CDiff may be gone, but we are hesitant to get excited because we can't say yet that that is the case. She is on no antibiotic for the CDiff right now, so the next weeks will be telling.
She is still being treated for the Candida in her esophagus. The Infectious Disease doctor added another week of antibiotics for that because we don't want it to spread to her gut.

Today she doesn't feel well at all. She has a super sore throat and chest congestion and has started with a cough. She was just sick with a respiratory virus and because of that she hasn't been able to get her flu shot (she needs it because of her weakened immune system)or her shot to prevent pneumonia (because she had pneumonia this year she must have this)...she was supposed to have those this week, but now she is sick again. This is so frustrating. We are praying this stays a simple cold as bronchitis or strep or a sinus infection or pneumonia would require an antibiotic and she cannot be on an antibiotic for those things as it would cause a recurrence of the CDiff. Such a cycle.

So that's where we're at. Waiting, watching, praying and hoping. Please keep praying with us for our Liz.

Character

I think my dad was in heaven helping Jackson this afternoon. I am sure it brought back memories for him....and I'm sure he is happy he may actually have a kid to cheer on at the rink instead of watching strangers play. He misses my brother terribly.



I think this was the point at which he said "I'm gonna punch some faces!"
Whoa there, tough guy! I reminded him that there is no hitting on the ice until you are a big man and you are taught how to fight...and even then it is a dumb thing to do. Seriously.




"Mom, do I look like Uncle Travis?!"




"Okay, now do I?"



Getting a bit better....




This coach was wonderful and I was grateful for his help and attitude with Jackson.



He was exhausted after the hour. Look at those yummy red cheeks!




Supportive Liz and Kate...who have decided they love this hockey thing because they get to wear their cute coats and scarves (rare for SoCal) and hit-up the snack bar.



I have been moved to tears with pride for Jackson a few times before. I remember watching him in speech therapy when he was younger and knowing he was trying so hard to mimic the therapist no matter how difficult it was for him to find words. Last January he was very sick and hospitalized six days. He handled it so well and I was proud of him as he endured the pokes and pain.This afternoon, though, I felt a different kind of pride that I struggle to find words to describe. Tears I have.

Today Jax started a four week program geared towards kids under 8 who have never had hockey lessons before. He has been looking forward to hockey for months and today couldn't come fast enough for him. Travis called from the road (he's with the Winnepeg Jets right now) and spoke to Jack-which made him even more excited- and then talked with me-which freaked me out more than I already was as he asked me about gear and how to put it on. My dad and brother both recall how Travis asked to try out for the ice hockey team without any knowledge of how to put on the gear. Trav literally copied what he saw the other boys doing in the locker room that first day. Luckily my dad has had hundreds of times spent on his knees as he laced skates and suited-up Trav. I was so happy to have his help today(I also learned how dumb it is to wear flip-flops to the ice rink)!

My son, my amazing son, fell and got back up for an hour straight. It killed me as a mom to watch him fall and struggle to get back on his feet time and time again. My instinct was to run onto the ice to help him. (For family and friends who were at the beach house...Jackson's falling was equivalent to Trav's attempts at Paddleboarding in Oceanside. You all know how painful that was to watch! Don't kill me Trav, it is the best picture I can give of how difficult a time Jack was having : ) And for the record, to those who weren't there, Mr. Hockey did finally catch a wave on the paddlebaord!) Skating in full-gear on hockey skates is much different than skating for fun. A few times his eyes caught mine and he had such a look of defeat that it took everything not to pull him off the ice and head home.
Not once did he say he was finished. Not once did he give up or ask to go home or say he couldn't do it. Not once during that hour of dozens and dozens and dozens of falls.
My dad leaned over at one point and said "this is character building stuff!" He is right and man, did Jackson show us he has character. Will he be the best or grow up and go Pro like Travis? Probably not, and that doesn't matter. I just want him to do what he loves and he is passionate about, whatever that turns out to be.

I will remember today for the rest of my life. Years from now I won't recall what color jersey Jax wore today or how many kids were out on the ice with him. I may not even be able to picture how he looked the times he did skate or move the puck. What I will remember is how he never gave up no matter how much he struggled. I will remember the character he showed and how proud I felt.

Princess

My Superhero loves me; he adores me! The older I get, the more I realize there are few things I know for sure - my Jackson adoring me is one of those things....at least for now.
Years ago I saw a news segment about a missing woman. Her young daughter was asked to describe her mommy's appearance and she replied "She looks like a princess. You should just look for a princess" For obvious reasons, as a mom the very thought tugged at my heart.

Jackson often asks to brush my hair and if I give him a penny, he'll give me a neck massage. If he's loving me especially on a certain day, he'll tell me I can keep the penny and he'll do it for free.
He fights with his sisters to sit next to me at dinner and he loves to help me with chores. If he likes me most, I even get to be the dinosaurs wen we play and not the cars...the dinos always win the cars in fights, he says.

I expect much from my little guy because, after all, he will one day turn into a man and it is our job to raise him to be a kind, respectable, responsible man of God. At his young age he accepts my challenges for good behavior and kindness eagerly as he so wants to please me. I realize this may change as he gets older, but for now just a nod of approval from me makes him happy.

Yesterday as Jack sat cuddled next to me,I had the memory of that news story flash into my thoughts. I have no doubt that in Jackson's world, I am a princess. That will fade, I am sure, but for now, I will soak it in.

No Offense

Elizabeth went to school today for a few hours!!! YAY! She is still in pain and very tired, in fact yesterday she slept six hours during the day, but it is important she be at school. Yes, she needs the instruction and in-class time, but even more than that, she needs the socialization and to be a normal kid. Sunday she announced "But I caaaaaannnn"t stay home with YOU(me) for another day!...No offense."
Missing days and days and days of school is not good....so she went. We knew she should start back slowly and is too tired to make a full day, so she went from 9:00-12:00.

This morning I left her at school teary after a full morning of crying (followed by a three-hour crying marathon last night). She just kept saying that she was emotional, she was nervous about the schoolwork, and she doesn't have any friends (Kate is in her class, but that doesn't count I guess!). This morning she added how much she was going to miss me to her list of tear-starters. I lovingly said how much I love my time with her, but honestly told her that we are driving each other crazy being together 24/7 without a break for so long and we needed a change for a few hours.... no offense! : ) So she started the day a wreck.....and was all smiles when I picked her up at noon! She said she'd made seven new friends and she was so happy to be back at school. Oh, my heart!

We'll see how she is in the morning...hopefully we can have a repeat of today.

Oh, Cananda

O Candida, la la la la la laa. My witty comment now has the Canadian anthem (which our kids know as well as our own National Anthem from all the times they've watched Trav's games on tv) stuck in my head. No, not Canada...CanDida. Think yeast, thrush if it's in your mouth. Liz has it in her esophagus. On camera, and the pictures we have to add to her scope photo album, it looks like bits of cotton candy throughout her esophagus. Poor baby girl has stuff going on all throughout her gastro tract and tummy. The doctor says this is just another thing from her weakened immune system mixed, with all the bacteria she has staging war on her gut, and the antibiotics she's been on for six months straight. We don't want it to spread. She started on liquid Nystatin today, which is not a pleasant thing for anyone to swallow and taste. Another mind-over-matter task for her to endure as she must not drink or eat for an hour after swallowing the medication so that the Nystatin coats the Candida. She just can't get a break from all of this.

Her doctor called this morning to check on her and I was happy to report that after a rough night, she is doing better today as far as post-procedure pain and bleeding. Her poor bum is super, super sore and her throat hurts from the tubes and scope, but she hasn't had anything other than Tylenol for pain today, which is a positive.
Now we wait for biopsy results....



Today was a pajama day. The kids watched movies, made playdough animals, colored, played Sorry (long enough for them to end up in a fight, of course) ate candy as a pre-meal appetizer...and folded laundry. Liz told me she felt too tired to fold laundry, to which I replied it is a good thing a person can sit while folding laundry!

Understatement

Liz, half making herself relax and half tuning the rest of us out.


To say she is amazing is an understatement...Liz floors us with her strength over and over again. You'd think that after a decade of procedures, surgeries, pokes, pain and suffering, a person would just throw in the towel as far as attitude...but not my Liz. She never once said she wasn't going to do the colonoscopy prep or not cooperate with us. She doesn't object to our requests and tries so hard to show her strength. After 4 attempts at starting the iv today, her eyes started to fill and she was holding back her tears. I actually became upset (inside) and told her to not hide her pain...to cry and let us know how much it hurt. Her response was a simple, whispered "this makes me frustrated." How much of an understatement is that?!

The procedures went well, but her recovery is a bit rough and she is now on Morphine. Poor baby. Hopefully she will be able to fall asleep and sleep-off the initial pain and nausea.

We will get biopsy results early next week.

Please, please know that if you read this blog, I thank you. If you pray, I am grateful and know that we are lifted by every prayer.