Life is wonderful and difficult... and I am grateful!

Monday, January 30, 2012

I cling

Do you remember me telling you about my friend Holly's son, Spencer... as in, Stage IV cancer Spencer? Do you know that he just had his nine month (since ending treatment)scans and they are CLEAR?!
Do you remember me telling you about our little friend Alyssa, who during treatment for Leukemia developed Herpes Encephalitis and consequently lost her sight, then just last year had 2/3 of her brain removed in an effort to stop seizures and save her life? Today she had a scan and her brain looks so wonderful!

I cling to these stories, because they are reminders of how much of a difference time makes. How someone can be so, so sick and just a short time later be wonderfully well. Miraculous in those cases, actually.

Today we had an appointment at Millers with Pulmonary and Immunology. Pulmonary was a pretty simple visit (with a handsome new doctor seeing us today, if you ask Liz her opinion!); Liz's lungs still aren't expanding the way they would like and she'll have a lung function test soon. Another time this may be enough to worry me, but we have bigger things to tackle, and eerily, hearing concern over something like, um, breathing, doesn't phase me right now.

Liz's Immunologist, Dr. Brilliant, was not too happy to hear that I'd had an appointment at CHLA with an Immunologist there who takes issue with some things he's said. Dr. Brilliant also doesn't like that all of the specialties working with Liz haven't been communicating with each other (this I agree with!). There is much I could write about the visit, but it is all just too much. So, for the purpose of prayer and for journaling for me, here are the biggest things from today's visit-
* Liz had a bone age study done this afternoon. As the name states, this will check her bone age-how she is growing- and also give insight into whether she could be dealing with a disease that effects growth.
* We're going to go ahead with inhaled antibiotics, given daily. Hopefully this will help keep her from getting sinus infections and pneumonia, which require oral antibiotics which in-turn cause her CDifficile to reoccur.
* I am going to decide if we want to take her to Boston, Cincinnati, Texas or Philadelphia soon to see teams there.
* Blah, blah, blah!

Tomorrow we will head back to the hospital for another full day. She'll spend a few hours in the Infusion Center to get IV fluids because she is still dehydrated, she is sick with a cold, she looks awful, and we're hoping some fluids will help perk her up.
After that, we'll see Hematology/Oncology and get their input on what the heck we should do about the bone marrow and talk about when another bone marrow aspiration should be done. So. Over. It.

Please pray for our decisions over the next few weeks. Also that Liz's cold will not progress to anything worse. Pray too for her little spirit as she's feeling pretty down, I think.
Today she said "Mama, I am disappointed because I am missing my biggest year at school." So sad.

All this talk is a downer, right?! I'll end by telling you that my little guy keeps me smiling.
His latest- "Mommy, I feel like I'm going to throw up, so I need to go to a quiet restaurant because Lizzie's talking is hurting my eyes so I can't stand the noise here! Can we go to sushi?!"
Wow. All that just to try to get a dinner out : ) Love that kid.

I also love my adorable Kate, who is growing so old right before my eyes and who rocks a pair of glasses in such a cute-sophisticated-fashionable-nerdy way that I just can't stand it!

And I am super grateful for my health. Like, SUPER grateful!

Finally, I am overwhelmed with happiness for Holly and Juliette. To go through war with your little loves and to have come out on the other side with your healthy kids... what a difference a year makes. I can't wait to watch Spence and Aly grow up. I am inspired by your families.

Tomorrow is a new day! Oooo, it's tortilla soup Tuesday at the hospital! See, a positive!

{He gives power to the weary and to those that are weak He gives strength. Isaiah 40:29}

Sunday, January 29, 2012

Update

Two nights ago I had a panic attack, at least that's what I think it was. I was calmly sitting alone watching TV while the kids were asleep and out of nowhere I felt as though I could not breathe. The more I tried to calm myself, the faster my pulse raced and the faster my breaths came; I was hyperventilating. Ugh! Out if nowhere. I wasn't thinking of anything or worrying- and still it came.
Monday and Tuesday are big appointment days for Liz. I am very nervous about them as I need to have heavy conversations with both doctors and make a huge decision in Liz's treatment plan. Some days I think I don't have it in me to do all of this work-and it IS work- but I know I need to be Liz's advocate. We'll get through it.

Saturday was wonderful as I spent the whole day with my Kate at her volleyball tournament- just the two of us. I soaked in the joy of watching her play and have fun off the court with her friends. It is so important that Kate know she matters and I will make time for her amidst all of this yucky stuff with her sister. Anyway, Saturday was joy and I loved every second of it!

Liz has eaten well the last two days. Not sure that will make a huge deal as we know she's losing calories in large amounts just by resting, but it is nice to see her taking weight gain seriously and have her embrace eating rather than use the issue the opposite way. She'll have a weight check this week.

Thank you for continuing to pray for our Lulu.

Friday, January 27, 2012

Family Date Night



We'd planned all week to go tonight on a family date to Stacked, a new restaurant in our area. Walt and I knew the kids would think that ordering from an iPad is fun and we couldn't wait to take them.
Liz had to have another unexpected trip to the Pediatrician's office late this afternoon so we were worried our plans would have to change, but we made it!


{Dinner was good, but dessert was the favorite! Stack your own shakes are fun to order and eat}




{O' happy day! Jax couldn't get over the tall glass and super long straw}




{She could only have a few bites as a shale is a huge no-no for her stomach, but look at those eyes....yummy! SO worth "wasting" the shake, just to see her face!}

Looking forward to tomorrow's full day of volleyball at Kate's tourney. Walter has to work, Jackson has a party to attend and Liz is staying home, so it will just be the two of us....I am happy to have some alone time with my girl.

Liz is hanging in. Some calls have been made and we'll have a busy week of appointments, beginning with Immunology/Pulmonary on Monday and then Hem/Onc on Tuesday. She has developed horrible pain in her left knee that has been painful enough for tears and has been making her limp at times. An xray shows no abnormalities, so if the pain persists through the weekend, she'll have additional labs done next week to check for signs of inflammation and a type of virus that the doctor suspects.

Have a good weekend!

Wednesday, January 25, 2012

Picnic

You know the camp song "I'm goin' on a picnic..."? In it, you say that line and then each person states a food or picnic item they will bring beginning with a letter of the alphabet.
Today I have had the tune in my head, except the words go "I'm goin' on a picnic... and I am bringing a (B) Blanket! and a(P) Pillow!" That's it. No food, noone who talks, just something to sleep with.

Since going to the pediatrician every 5 days has become our new normal, why would today be any different? We made another unscheduled visit to the office because Liz has had a weird rash on her palms since Sunday. It is itchy at times and burns. The GI doc thought that it looked viral when he saw it on Monday. It has spread a bit, and given her history of infections, staph, and immune system issues, we were told to bring her in. Poor kid, I have had her wearing little mittens when she handles the phone or remotes because I do not have time or patience for us all to get some contagious, itchy rash. The pediatrician does not think it is contagious, so the mittens have been put away. Can life get any more ridiculous?!
It can, actually.

Today, when weighed on the same scale used just five days ago at the pediatrician's office, Liz weighed in three pounds less. She has lost 3lbs in just five days! So, now everyone is concerned even more than they were last week.
Now that we know her kidneys can handle extra protein intake, she will start on a supplement to boost protein and calories to her diet. We'll try this for a bit, and pray she gains weight, because if she doesn't, we'll have to get more drastic medically in how we try to help her gain. SO frustrating and scary, actually.
And if that wasn't upsetting enough, her labs from Monday show that her liver function labs are off. Her GI called me tonight to talk to me about the results and though he is concerned, he is recommending we wait ten days and repeat the labs before we start doing additional liver studies, given that this is her first time having abnormal liver labs. Her white count dropped pretty dramatically since a week ago, so he is thinking her body may be fighting a virus and this can effect the liver. Blah, blah, blah.
I will admit that seeing the liver numbers and then hearing him say he is concerned made me feel like I was going to throw up and I wanted to run, literally. Come on, now her liver?! I have a panicked feeling about this, more than some other things I have heard.

Labs also confirm that her nutritional values are low as well as her metabolic labs. Like I said, her white count and neutrophil count have dropped again, so she is immunosuppressed right now. Her plateltes have also declined, but this isn't surprising as we know from labs done in November that her body actually attacks her own platelets.

I talked with her Ped. today about getting her back to school. My goal had been February-ish, but her doctor wants her out until at least March, so there you have it.

It all sounds like one big mess, doesn't it? I feel like things are escalating and it is really upsetting. Tomorrow I will talk to Hem/Onc and my Pediatrician will help me decide what to do next. I would bet a lot of money that she will be admitted in the next week for fluids, nutrition and studies....but I am praying she isn't.
I don't have time for that. After all, I am going on a picnic.

Tuesday, January 24, 2012

A post by Elizabeth Claire

Hi. This is Liz.
Thank you for praying for me!

Now I am going to interview my mom.


1. What is your favorite color?
- I don't have one. I like blue.

2. Did your dreams ever come true?-
- Some of them. I always wanted to be a mommy, so that one came true!

3. Did you dream big?
- Not as big as I should have. Not as big as you do!!!

4. What are your favorite sounds?-
-A newborn baby's cry, Jackson's laugh, the sound of tires on gravel (Holly thinks that is a creepy sound, but I like it), the sound of a bat hitting a baseball, the ocean, rain, the sound of my children's voices. Music, of course.

5. This is a question I have been dying to ask you, but I always forget. Did your life turn out how you would want it?
- Hmm. Sometimes you don't want what you find out later is exactly how you should be. You know? I love my life. and I still have time to do things I want to do. Unless you are going to push me off a cliff. Are you going to push me off a cliff? : )

6. Who's your favorite fashion designer?
- Elizabeth Noel

7. Thank you! Did you want to be a princess on your wedding day?- You know, I never really dreamed about my wedding day when I was young.
WHAT? HOW COULD YOU NOT?-
- I just didn't. And then, I got married YOUNG. Too young. Liz, how old must you be to get married?
Thirty!
- Right! Anyway, I wanted to get married, but I didn't think about feeling like a princess. You should, though.

8. What's your favorite place in the world? Please say Paris!
- My favorite place is anywhere you kids or Daddy are. I love the beach house, you know that. Anywhere near the ocean is a favorite place.

9. What did you want to be when you grew up?
- A few things! I wanted to be a teacher. Or a dolphin trainer. I used to make Auntie and Uncle Travis play FBI, I was the agent. When I was in high school and college, I thought I would be a business woman or English teacher.
A teacher is too much work!!!

10. What's your favorite flower?
- You know this answer! I like Gerbera Daisies. I also like hydrangea and dahlias.

11. This is a funny one. who was your first boyfriend?
- Oh man! YOU aren't allowed to have a boyfriend until you are 16! My first boyfriend was Steve. Papa liked Steve and helped him become an Eagle Scout, but I think he also wanted to kill him : )

12. This is a really funny one. To this day, do you regret your honeymoon on the ship?
- You are silly! I wanted to go to Hawaii, but Dad wanted Mexico. He got sick...he should have listened to me and gone to Hawaii : )

These are good, Mommy. Thank you.
Thanks for asking, Love.

Monday, January 23, 2012

Update

Tonight I went to a meeting at the hospital for Parent Mentors. I dreaded going, as I am emotionally drained, I'd been to the hospital already with Liz today and since Walt was working, I needed to get a sitter (my sister) for the kids. I haven't mentored in about four months, actually, as I just haven't had it in me to be very encouraging to others.
I am so glad I went though and I left feeling a little lighter. There is something to be said about being in a room of mothers, all who know what it is like to have a sick child. Two women are older and had NICU babies themselves at one time, and now serve in the NICU supporting parents there. A few have children with special needs. There are two amazing moms who each have two children living with Cystic Fibrosis. There are two mothers of diabetics. Our group is small, but mighty. The support we can offer parents who are grieving, stressing, barely coping, wondering...and many other "ings" is more than valuable. We are strong and compassionate....and I feel empowered just being around the group.

Feeling empowered is a pretty great thing, especially when I have been feeling so very weak lately.

Elizabeth had an appointment with her gastroenterologist this afternoon. I am sad and frustrated to report that she has lost more weight and is now diagnosed as being malnourished. Ugh! For months and months she has not been gaining weight, but for the last four, she has been losing. Being petite is fine (though I have never and will never know how it is to be petite : )); being petite and not being able to grow as you should is not alright. Her doctor is quite concerned....umm, hello?! Yes, concerned is a good word for it. I keep reminding the docs that Liz was at least maintaining weight and growing, even if at a slower pace, until two years ago- the same point at which all of this blood and bone marrow stuff began. Not a coincidence in my opinion.
At 10 1/2 years old, she is 55 inches and weighs only 64 pounds. She is also pale and it makes me hurt just to look at her at times.
Anyway, we are at the point, he says, that we need to start thinking about being aggressive with her weight. Before that, though, we need some lab results that were drawn today to come back. Her doctors do think that she has a high metabolic demand, which leads to a few things, one of which is that even while at rest, her body is burning calories. When your metabolic demand is high, your organs also have to work harder- your heart, brain, lungs. Dr. Brydon (my cousin), you are probably dying reading this and my poor attempt at explaining it all.
We also addressed her dehydration issue. The doctors are now concerned, based on labs and the fact that she has been dropping protein along with her dehydration, that she may have an issue with her kidneys. Chase that tail, doctors, and tell me if I need to come and look. Seriously, I just can't "go there" unless it truly is a problem. We'll get results from labs done today soon.

If you are praying, please pray for some of these things. Also, Liz developed a strange rash on her hands yesterday that the doc says looks viral. She just can't stay well for even a week. We are praying that whatever it is stays simple or goes away.

Grateful for your support,
Allyson
*** Things that made me smile today:
-A dear friend who has known great loss, delivered a healthy baby girl today! Welcome to the world, Evelyn!

-Liz told my sister that she is going to grow up to become the Mayor of Paris. "I'll be the real Mayor, but there will be another mayor to do all the work. My house will be connected to the Eiffel Tower and there will be a runway connecting the two!"
Dream big, Liz.

My blog will be going private soon. Comment or email me with your email address if you would like to be "invited" to read my posts.

Saturday, January 21, 2012

How

How can this be happening? Could things be so much worse? Yes! Do I constantly notice children who are more sick than my girl and thank God that we aren't facing their journey? Yes!

Yet still, how can this be happening? Why is this happening? How can we make it stop? Will it ever stop? I catch myself saying certain phrases that spill out of my mouth so easily and so often they are starting to feel cliche. Like, how soon she will be better, or how I joke that she will be fine in a year, but I will be a wreck from all the stress.
Two days ago I went through our online photo album, looking for photos of Jackson, and I was sickened by how much Liz has changed in appearance. Have you seen the difference? How come no one told me how different she looks?

How is my girl missing all of her 5th grade school year? How did we get to a point where the doctors decided it is best for her to be home? That is huge. One month out of school turned into two...then three...then four... How?

How is it that Liz has been scanned and poked and gone to the OR more times than I can count and still she is not better? How can I not offer her an answer when she asks why I am allowing all of those things and she is still not well?

How can we have seen lists of doctors and specialists, at five hospitals, and still no one can piece all of her deficiencies, infections, abnormalities together? How?

How must Liz really feel? What secret thoughts does she keep from us? How will being sick effect her when she is older; when she is better? How will she get better?

How are we doing this? If someone would have told me that Liz would be sick, and all the ways it would effect our life, I would have been too overwhelmed to even imagine how we could manage....and yet here we are, just trying to do the best we can. How are we doing? I don't know, I have no idea how to do this well.

How do I keep things normal for Jack and Kate? How do I keep my marriage strong when we are feeling so weak? How do I keep joyful when my heart is heavy? How can we keep from feeling alone in this? How do I keep myself from getting angry at God?

How did we get here?

How?

Friday, January 20, 2012

Baby, Baby


This is one week old Harper....isn't she just yummy? She technically is my niece, but once she can be away from my sister for more than an hour, that baby is mine, because.....

My mommy-heart doesn't feel "done" having children. Once you are a mother and you know that you are officially done having babies, I imagine every woman may feel a twinge of sadness. Or wonder, maybe. For sure, when you are done having children but truly feel as though you'd like another, there is a stomach drop that occurs from time to time. Usually it happens when you catch your youngest child outgrowing a stage, or when you hold a baby in your arms and know you'll never hold a baby of your own again.
Last week Walter said he wished that we could have another baby. Stab my heart! This is the same man who, so traumatized by having twins exactly one year into our marriage, I had to promise would never have to change a diaper (I did not keep that promise!) if we could have a third child.
We won't ever have another baby, though. For one, Walt has had a vasectomy, which is kinda a huge contributor to the issue! I also had awful pregnancies and preterm labor with the twins and Jackson, and I don't know how responsible it would be to carry another baby. And then there is Liz.
So... we are done. Grateful for three beautiful children, but done. Boo! I'll have to just hope that one of my sister's girls decides at some point to run away from home and live with me.

Thursday, January 19, 2012

Prayer Request

I cried last night as soon as Walter walked in the door from work. I wasn't going to, but then he asked me why I was quiet and the tears started. I cried today in front of the pediatrician. I could cry now. Blah!
This week my calendar was unusually clear; NO scheduled appointments for Liz. So exciting...and so screwed up now that today we made an unscheduled visit to the pediatrician and we are waiting to see if we'll have to head to the ER for her to get some iv fluids.
For the past two days Liz has been super pale. She has been pale for months, but some days she is scary-pale, and the last two have been two of her worst days. Last night she had quite a bit of blood in her stool and today her gums bled. Her eyes are blood-shot and her lips are so cracked. I decided to take her in rather than wait for the appointments she has scheduled for next week.
Her pediatrician says that just by looking at her and knowing how many times she isn't peeing, we know she is dehydrated (for the record...DUH!), but she also showed me that labs from Friday, when I told the Infusion Center nurses I thought she was dehydrated, showed that she was indeed super dehydrated. So, Liz has until this evening to show us she can drink...or we'll go to the ER for fluids. Let's just say I am planning on that happening because she has had only 10 oz today and her stomach is sick, so I don't see her being able to drink much more.
Her poor little bum is so painful for her as her she has a few fishers- the cause of some of the blood and most of the pain.

As soon as I got home from the doctor's office, the doctor called to tell me she had just received a fax report from the CHLA specialist we saw last week. We have some big decisions to make regarding Liz's care. She'll soon have some more specialized white count testing, a bone age study, and she will begin taking long-term inhaled antibiotics in an attempt to keep her from developing further sinus and respiratory infections.

Today the nurse said "Mom, you look tired and frustrated today."
Well that's the understatement of the decade. If you know me, you know that though I have a horrible poker face, I go out of my way to minimize how tired, upset, or over-it I may be. That is getting more and more difficult to do.

Praying our girl can get to drinking and we can avoid more trips to the ER for hydration.

Wednesday, January 18, 2012

Boys Will Be...



Jackson insisted on wearing his collar "popped" yesterday. I thought for sure that he would put it down sometime during his school day, but nope, when I picked him up that collar was still standing up, hugging his cute little neck.
My brother has an issue with popped collars, and so I instantly think of him when I see a guy sporting one. I told Jackson that Uncle Travis doesn't like collars up like that and he responded by telling me that Uncle Travis doesn't have to look at him!


My little guy is changing. He has gone from my overly obedient, calm little boy to being, well, all boy. This undoubtedly stems from the fact that he is in school now, surrounded by boys, rather than being home with me and spending most of his time with sisters and girl cousins. Jackson has always enjoyed time just hanging out and has been so mellow...until now.

And like all men, he confuses me. One minute he is telling me something super sweet. Like yesterday, when he came to sit next to me and I asked him why he smelled like he was wearing Kate's lotion.
He said "Because it smells so good I can't stand it and I don't have a wife to hug yet!"
Of course my sentimental femaleness translated that as he likes the way girls smell and he doesn't have a wife to hold and snuggle up to, while taking in her perfume or lotion. {Walter Noel, I know you are rolling your eyes at this point, thinking that isn't at all what he meant, but you better not say a word to me otherwise!}
Sweet, sweet boy, right?
Cut to today when he got upset with Liz and spit in her face! My child spit in someone's face! I was so shocked I just stood still at first. How could my boy spit? In. A. Face! He was just wearing girly lotion yesterday. Nice, yummy-scented lotion-appreciating boys do not spit!

I am learning that this whole raising a son thing isn't going to be as easy as I thought. I personally do not accept a boys will be boys way of thinking. Boys will be boys, yes. I must allow him to be rough and tumble, messy at times, a bit crazy, a bit dumb (c'mon, you know this is true), a bit detached. However, I won't let him grow to be disrespectful or dirty or mean or bad, using "boys will be boys" as an excuse for behavior. This is a line I am learning to walk.

I love my son. O' how I love my snugly, caring, loving-life little boy. I just must learn to accept that he is starting the long process of growing into a little man...and I'll have to mourn that for a bit.

*** If you too have a little guy (or THREE little men, as she does!!), you will appreciate the insight and honesty of my friend Wendy. She keeps a blog that can be found here: http://lovecovers.webs.com

Monday, January 16, 2012

Let me set it straight-

I sit here writing this, shaking and crying. A mix of complete anger and frustration.
Let me set the record straight -

I would crawl, with Liz in my arms, any distance if I knew of someone who would be able to completely diagnose her and help her get back to where she was two years ago. I would literally crawl. I would beg and even steal if I knew that would fix my girl. UNTIL YOU HAVE BEEN IN THE SAME POSITION, YOU DO NOT KNOW MY MOTHER'S HEART PAIN OR FRUSTRATION.
So, for those who question whether I am "doing enough" or have "taken her to the right hospitals" or "asked the right questions".... stop questioning.
We have been to UCLA, CHLA, Cedars and CHOC. My binder of her records weighs 8lbs.
I have questioned, argued, pleaded, advocated, fought for and demanded my way around each hospital. I have sat at round tables, with all of the wisdom and arogance a room full of physicians holds and held my own as they each volleyed back and forth with their medical talk. I have stood eye-to-eye with the white coats and not backed down.

All of this, all if it, I have done for my daughter.
I know that questioning me must come out of caring for Elizabeth, but it is hurtful to me. Liz is not a clear cut case, and no one knows exactly which specialty her issues stem from, which is frustrating to even the doctors.

If you think you are worried, frustrated, anxious, confused and demanding answers....I assure you, as her mother, I feel these things a million times more. Having a child is having your heart living outside of your body.... Liz is my heart and it is breaking as we journey through this.

I would carry my girl to the "fix-all". I would die for my baby. I will advocate for her until she is well. Please support us, help me work through my decisions if I ask...but never, ever question if I am doing right or doing enough for my child.

Sunday, January 15, 2012

Saturday




Yesterday was Kate's first volleyball tournament. It seems fitting that, after three location changes, it would end up being held at CSULB in the Gold Mine. I grew up in this building, and it made me smile to watch Kate play in it. I was not an athlete (shocking, I know), but our family has roots with LB State athletics, and I literally spent hundreds of days and nights (many times, homework in hand) being dragged to every basketball and volleyball game held in that gym (and later the Pyramid). I strongly disliked the games, but I love the friendships gained from hours spent there. The McDonalds, the Reyburns... Plus, my grandparents were always there, and I thought time spent with them was very special.
Anyway, it was special to see my Kate playing in the Mine, and I found myself glancing over at "our seats" a dozen times yesterday.

Elizabeth and Jackson attended one of the games, but were then taken home by my dad. It was important for me to be with Kaitlin and I had a fun day with her. NO talk of doctors or meds; she didn't have to see Liz being doted on....it was all Kate, all day. She deserves that.

Kate's team swept each set they played and started the season off in a big way!


I think Kate's favorite part of the day was eating and hanging out with her team at our "camp." These tournaments are long and each Club sets up "camp" for the day- canopies and tables go up, tons of food is brought out, and chairs circle the camp, for downtime during the day.



I cannot stand how cute she is! I love this girl.






Warming up.....and totally annoyed that I was taking pictures -

a href="http://4.bp.blogspot.com/-BuN_U27eeTs/TxOIJIhaTkI/AAAAAAAABGs/ufLKqTUOtvc/s1600/001.JPG">






Jump Kate, Jump!






After our day of volleyball, we visited baby Harper.




Liz adores Harper and is already having fun putting bows in her hair









And, two days after her last infusion, look who feels well enough to bake cookies.....



Keep praying, because it seems to be working! Not only has Liz not had the extra-harsh side effects we expected after the bumped-up run of her IVIG on Friday, she has been better than she was even after last month's infusion. Headache is controlled and no fever! Effects can show up in the weeks after infusion, but for now we are super hopeful. She is very pale, and I am worried about how anemic she may be, so please pray for her counts (blood) to stay on the safe side.

Friday, January 13, 2012

Cyclone




The past few days have felt like I am a cyclone of a mess, rushing from place to place, checking off my list, but feeling like I have not accomplished anything enough to finally rest.

Yesterday I woke early to be at the hospital with my sister Megan while she labored and delivered her third baby. Such a gift to have been able to help coach my sister through all of her deliveries and then witness the birth of my nieces. No one knew the sex of this baby before she made her entrance into the world (I did think it was a girl, though!) and I think it is just perfect for my sister to have a home filled with princesses! Baby Harper is beautiful and healthy!!!
Meg and I both labor and deliver super fast, so with a start time of 5am, and having Meg already 5cm dilated going into the hospital, I was sure I would be able to make it to LA for Liz's appointment there in time. Harper had other plans, and her face- up (instead of down as it should be) and cord around the neck self took longer than we all expected. I could see her little head stuck in the same spot for over and hour and I told her over and over again to please hurry up so that I could make it to LA in time. She was born at 1:13 and I ran out moments after her birth to get to Los Angeles for Liz's 2:30 appointment. Phew.

The LA appointment was with a new Immunologist that our pediatrician asked to see us ASAP. He is supposed to be amazing at putting "puzzles like Liz" together and we were to be seen as soon as he could fit us in. In only 4 days we were squeezed into his schedule.
I liked him very much. He entered the room with four aspiring physicians and spent an hour and a half with us. I could go on and on about all that was talked about, but it comes down to just a few key things. He was recommending that we stop IVIg, at least for now. This is a huge thought. We just started, and have been clinging to this as our fix-all for Elizabeth. He gave clear reasons behind hos recommendation, and they too seem rational and appropriate. Liz's IVIg was schedule for 8:00am today, so I literally had hours to make my decision. He bluntly said to me "you are stuck in a hard place and I don't envy the heavy decision you will have to make tonight."

After a very long night of thinking and weighing everything, I decided to proceed with the scheduled infusion this morning. I will have to talk to all of the other doctors to get their input on what the CHLA is recommending, and will decide at that point if we want to keep going with the IVIG treatments.
The CHLA doc does agree on some things. First, that Liz is sick and that "something is going on" (no kidding?!!!) and that she needs more testing. He feels that her issues stem from her neutrophils. So frustrating!! He also agrees with the UCLA/LB Immunologist on the recommendation to start her on inhaled antibiotics, to be given long term. The thinking behind this is that 1. Being on antibiotics, even without having an infection, will keep her from getting infections that then lead her to need antibiotics that in-turn cause the CDifficile to rec cur. 2. She has had so many sinus infections over the past three years, and an inhaled antibiotic may help that better than an antibiotic taken by mouth.
Of course, inhaled antibiotics are not common practice. Yesterday I was struck by the thought of how many times we have been presented with an option for Liz that is either not usual protocol, new and untested, or a trial medication. I have begun to worry that these will add up and I am harming her. Still, my back is against the wall in these cases, and it has been necessary. It makes me sick, literally, to think about.

So, she had the IVIG today. We stayed for two extra hours because she is dehydrated and the doctor ordered for her to sit with iv fluids running. Today is one of the days when I have looked at my girl and thought of how sick she looks. She has "good days" and "bad days"....and then she has "sick kid days." Today she looked like a sick kid.
Last time the infusion ran for 4.5hours, but today they "bumped up" the speed, so it only took 2.5/3 hours to run. A little break down in communication caused this to be done, and it is not something I would have wanted, as running the IVIG faster can cause more harsh reactions in the days that follow. Please pray for Elizabeth over the next few days; specifically that headaches, nausea, fatigue and especially fever are minimal.
Thank you for your support and prayer!

Tomorrow the day will again begin early as Kate and I head to her first Club Volleyball tournament!!! She is super nervous and excited at the same time. We are learning that these tourneys are no joke, complete with each club setting up "camp" for the day and tailgating. Fun! It is amazing how life just goes on during all of this with Liz...because we'd have it no other way.
Looking forward to a Kate day of volleyball!!

Wednesday, January 11, 2012

Baby Day

Tomorrow I will have the amazing honor of helping coach my new niece or nephew into this world. In a month that has been full of many deaths of people I know, I can only think of "He gives and takes away." Tomorrow will be a huge "give"

Tonight, Liz asked "Won't it hurt you to see your sister hurting? I can't be there when Kate has a baby because I would be too sad to see her like that! Doesn't it hurt more than anything?"

And then Walter chimed in....wait for it.... "Not more than anything"
I know some of my girlfriends have had thoughts of hurting this man in the past, but I know that now this makes you want to kill him....and I just may let you.
Not more than anything?! Excuse me, but until you've worn these big shoes, buddy, keep quiet!
I said "There may be something in the world that hurts as much as having a baby, but I don't know that there is something that hurts more. Maybe the same, but not more."
My all-natural, no epidural self then added "You are pushing a body out of body, for goodness sake!!!"
That last comment traumatized the girls enough to ever give birth themselves, I am sure.

So, tomorrow is the day!! I was present for Taylor and Makenzy's birth and coached my sweet sister along both times (as her husband tried to keep himself from fainting, poor guy). This birth will be extra exciting because no one knows the sex of the baby. Eeeekkk!!!

Megan being in labor tomorrow is a nightmare of logistics, as labor-isn't-the-most painful-thing-but-about-died-from-a-kidney-stone-himself-and-let-the-world-know-it-Walter has to work and my schedule is full with appointments, carpool, volleyball and Liz's home hospital teacher. Thanks to friends and my mother in law, I think we have most covered. I would never miss it!If Meg can deliver by noon (we both deliver super fast), I will screech on down to Los Angeles with Liz for an important appointment with a new doctor that our Pediatrician has asked to see us this week. He is supposed to be one that can help us most, so we'll see.

Happy Almost Baby Day, Megan!!! I cannot wait.

Tuesday, January 10, 2012

Prayer


I have this plaque hanging in my home. My sister gave this to me two years ago and I let out a little sigh the moment I saw it. It once hung in the living room, then the back family room, and now hangs in the hallway outside my bedroom. I moved it because I am a busy mom, and let's get real, I come to my room only to rest after each long day..... or if I need to escape for a few precious minutes during the day. Having this as a reminder as I head to my room- the place I rest, think, reflect and cry- is what I need.

Prayer changes things. At one point in my life, and even now at times, actually, I would hear those words and think "prayer fixes things" or "prayer changes things to be the way I would like" or "prayer makes things the way they should be".
But that is not so. In this life I am learning that is not the case.

Loss seems to be everywhere lately. I attended a memorial service for my sweet friend Sarah's mommy yesterday. Sarah is my age, but when you need your mom-and certainly when you lose your mom-I think "mommy" is a word that may be used. I wrote a while ago in a blog post asking for prayer for her mom Sherry. Many of you had Sherry as your labor and delivery nurse at Memorial. Such a difficult loss of a young life for the family....and for the world, actually.
Today we heard that Tyler Noesen died. Tyler is a Poly graduate, son of my OB, and an inspirational man. So, so young. My sister and I literally gasped when we heard and we both sat shaking our heads and uttering how short life is.
Another family we know at "Liz's hospital" is praying right now for their child's life to be spared from the grasp of cancer.
All of these families prayed....and their prayers for healing were not answered in a way they would have hoped.

Last night Liz stood in front of the mirror playing with her hair while Kate and I sat on my bed, working. Liz spoke and said "Am I ruining things because I am sick?"
I told her no, and asked why she would say that. She replied that Kate often says she ruins things and that at the doctors' offices I seem really frustrated.
Sigh.
I told her that Kate does get disappointed sometimes when plans change because we need to run to the doctor or hospital, or when Liz isn't feeling well. Kate should not use the words "ruining everything", but I reminded her how she too has been disappointed by Kate and the rest of us before, and that's what Kate is feeling.
I told her how smart she is because she is right....I am super frustrated when we are at the doctor's office. I just want them to fix this so badly and I am so sad that she has to feel sick for so very long.
And then she said "Well, I am super frustrated at God. Why is He doing this still?" And she started to cry.
My heart.
We talked again about how God is using her life. About how we are here to bring glory to Him and how she is doing that. About how He knows she is strong enough to do this. About how people are praying for her to HIM who may not normally pray.
I know this, and I say all of this, but you must also know that I am not anywhere close to perfect in my faith. I question Him all of the time and I get angry at His plan when I see pain being caused.
I get angry when prayer doesn't change things in the way I would like.

As matter-of-fact and purely as she could ever voice, she then said "I don't understand this world."

I don't understand it either. At times I think I do, and I have my faith and I know He has a plan....but there is so much I don't understand.

Prayer changes things. It can help heal, bring comfort, bring peace, bring us closer to each other and to God. But it isn't always answered and it doesn't always fix things or heal people or make miracles happen.
And still - I will pray. For big and even small things, I will pray.
I will fall to my knees in prayer. I will gather with friends and hold hands and pray. I will pray for traffic to be light, or a raise to come through, or something good to happen for someone I know. I will pray each night for the health and safety of my family and each morning I will pray (as I always do as I pack their lunches) for my children to have a good day and return home safe. I will pray over Liz when she is most sick or when a difficult decision regarding her care needs to be made.
I will pray and I will wait....because prayer changes things.

Monday, January 9, 2012

Long Day

Much to say, but no time tonight, so I will post a longer entry tomorrow.

Today has been long and emotional....
attended a beautiful memorial service,
had to rush Liz to the doctor (she was shaky all day, her heart was racing and then she got a fever. At the pediatrician's her heart rate was high and blood pressure low, so we know the reason for the shakiness. She is dehydrated and that is the reason for all of it. Boo!),
had a heart to heart with Liz's doctor,
taught Kate how to shave under her arms (yikes! How did that happen?!) and ended the night with Liz curled up crying and asking if she is "ruining things" by being sick.

That is running the spectrum on emotions, right?

Emotional and busy. Going to sleep, knowing joy comes in the morning.
Please pray we can avoid hospitalization tomorrow for Liz..... we are counting down the hours until Megan goes into labor, after all, and we don't have time for the yuckiness of a hospital stay : )

Saturday, January 7, 2012

Roots

{Love is a temporary madness. It erupts like an earthquake and then subsides. And when it subsides you have to make a decision. You have to work out whether your roots have become so entwined together that it is inconceivable that you should ever part. Because this is what love is. Love is not breathlessness, it is not excitement, it is not the promulgation of promises of eternal passion. That is just being "in love" which any of us can convince ourselves we are.
Love itself is what is left over when being in love has burned away, and this is both an art and a fortunate accident. Your mother and I had it, we had roots that grew towards each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were one tree and not two.}
-Louis De Bernieres



A while ago, I read this passage on another blog, and it made me hold my breath for a minute. It struck me....and it has stayed with me.
Last week I heard of yet another couple who have a child with medical issues divorcing. My heart sank. Marriage, at some point (for some, at many points) is freaking hard! Life throws things at every couple, and we all know how difficult it can be to hold on and figure out life together - forever- with a partner.
Having a child with medical issues just takes the everyday stuff and elevates it. Some of you know of a time when Walter and I were separated and I have no problem sharing how hard Liz's illness has been on us (among another huge thing). The stress and pressure of trying to manage the care of her while caring for the other two, and the house, and Walter's work is a lot. Finances are obviously an issue as medical bills pile up, can fuel arguments and lead to a stress all of their own. Isolation is also something that weighs on a marriage at times like this. Many times, we are two ships passing in the night. I stay with Liz at the hospital when she is in and I can go days without seeing Walter. Even when we are not inpatient, time together is difficult to make happen either because I use his days off as days for appointments, or we take that time to be with the kids, or we are simply too exhausted. The emotions and grief that naturally come lend a hand in making marriage hard during this. The grief of knowing life isn't as planned, and if I am honest, even being envious of other couples/families and their good "luck" play a role in our feelings. People process their feelings differently and it is easy to lash out to those you love most.

There is no other way to put it really other than to say the same word over and over again- it is hard. Walter and I were thrown into "hard" from the start of our marriage, it feels. Exactly one year into it, we were 22 year olds with twins who both faced surgeries and constant support. Rough stuff.
Our separation was for a totally different issue than a link to Elizabeth's illness -though it didn't help, that's for sure.
Actually, Elizabeth's declining health over the last two years brought Walter and I back together. I don't know that we would be together now if it wasn't for Elizabeth getting worse.
And still.... it is hard. So much work and so very hard.

When I hear about a couple with a child who faces chronic illness or disability ending their marriage, it hits close to home and causes my stomach to drop. I used to think it was either sink or swim. Now I feel that sometimes it is more like sink, swim, or hold on for dear life.... and hope that with trust, friendship, examples and influence of other marriages that go through health issues of a child(Sarah H., Holly), and a lot of work, we grow towards each other and not apart.

So, to my husband, who I know stalks my blog {:)}- I hear you. I see you. Life has at times (like, a LOT of times!) been mean and ugly and exhausting for us. I know how we both feel like there are no blossoms or shade left for barren, storm-weathered trees like ours at times. And still, some hold on, because when it is all said and done, their roots have grown to become one.

Tuesday, January 3, 2012

A little like Mayberry

A short update.
Elizabeth has not had a fever in a couple days, and although her cough sounds horrible, she is no worse and is able to sleep. The steroids seem to be helping, thank God. She'll have repeat chest xrays if her cough is not better by early next week.
For now, we have no appointments until next week when we have Infectious Disease, GI and then her next round of ivig on the 13th. We are hoping that our only trip to the hospital in between now and then is for the birth of Megan's baby who will be here any day! So exciting!!




Today I allowed Elizabeth to have a friend over for just an hour and the two of them set up a table outside to sell lemonade and cookies. I watched them from the kitchen window as I chopped vegetables for a soup I'm making (How domestic of me! Those who know me well are laughing right now as I am not the best cook. What can I say, Pioneer Woman can inspire even me).
In what felt like Mayberry, I was in awe of what I saw out that window. I warned the girls that it is a work day and they shouldn't expect many customers, but so many cars did stop to buy from them and even the trash truck made a second trip down the street and stopped to simply hand the girls each a dollar- without wanting any lemonade at all. So fun! Three neighbors from the opposite end of the street walked down and took time to ask the girls about their Christmas and offered compliments on the yummy lemonade. The girls even put up with Jackson as he rode back and forth on his bike yelling "Get your free lemonade...only 50 cents!!" Ha! We're going to have to work on his delivery.
I have mentioned that a certain Mr. Coppenger lives across the street and he and his roommates are so great with my kids. They always come out to buy whatever the girls are selling and today one of the guys brought over a large umbrella with a stand and insisted that the girls not be in the direct sunlight.

Now, none of these people, not even Coppenger, know that behind the lemonade stand is a story of little Liz, who has been bored to tears many times over these months as she is isolated from school and friends. They don't know that she was so very excited for a play date and to be able to set up her cute little table, put on her apron and pour cups of lemonade with the hope that people would stop buy to purchase from her.
Nobody knew any of that, but the sweet things happened anyway.
A little like Mayberry, right?