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

Thursday, October 27, 2011


It has been a while since my last post. You know the phrase "If you can't say anything, don't say anything at all"? Well, I have been living that phrase for the past week or so. I actually have said this week how grateful I am for access to medical care and for the lives of my family and for my health.....but I am also burdened with an incredible frustration and that seriously effects my positivity. So, I have been pretty quiet.

The latest update on Liz is pretty negative, so I will start with a positive; with a wonderful blessing....
As I rushed out of Target tonight with Elizabeth's latest prescription, there was a man soliciting on behalf of "the children." He bellowed at shoppers to "C'mon and give money to the children!!" As he saw me, he asked and I shook my head no. He asked again, louder. I said "Not today." He then said "I know you have money in that big purse to spare."
If you know me, you know my "are-you-freaking-kidding-me face." Let's just say I gave him that face. What I really wanted to do was say "Yes, I am blessed and I have much more than many people in this world have. I also have less than some people in this world have. And though I have a 'big' purse, a purse with money in it, I just spent $330 alone this week in co-pays and medications. I also just found out that this new prescription will cost me $325.00 over the next week. So, please don't assume what you don't know."
I wanted to say all of that, but I didn't. Instead I kept my yucky face on and marched to my car, while tryig to remind myself that I am grateful to even have access to the medication.
Now, for the wonderful blessing- Our church has been unbelievable with how supportive they have been. Cards for the family sent by members, gifts for the children, wonderful artwork and prayers from the Sunday School classes, and the constant reminders that we are being prayed for. Our Life stage Group (parents of young children) held a garage sale last month and last week, we received a check in the mail from proceeds of that sale. This is such a gift and a reminder of how He works in our lives, through the kindness and generosity of others.
I told you it was a wonderful blessing!

Now for the update.
Thankfully, Liz does NOT have Cystic Fibrosis. That is a harsh disease and we are praising the fact that this is not a diagnosis for her!
We will meet with the Pulmonary/Immunologist again next week to go over all the other labs, but I do know that some results that have come in show a problem with her lymphocytes and immunity factors. I will post more once I speak to the doctor.
She still has the cough she's had for two months. We thought the antibiotics the doctors prescribed for a sinus infection would clear that, but the cough is actually worse.
Over the past four days she has been complaining more about stomach pain and she's lost a 1 1/2 lbs since last week. Last night she started with bloody stools again. Our fears that her being on the antibiotics for her sinus infection would cause the CDiff to take-off have come true. We are so, so sad for her. She started on a drug today for CDiff and if she's not showing any improvement by tomorrow afternoon she may be admitted to the hospital. Her colon is a mess and the cramping, nausea, fatigue and bloody stools are just awful.
I wish I could write more of how I am feeling, but right now I am just too worn down to find the words. Please, please pray for our Liz.

Friday, October 21, 2011

Update in photos

Our day in photos. Please pray for Liz as she has not been feeling well tonight at all. We see the doctor first thing in the morning if she can avoid the ER tonight.

Liz is so brave. She doesn't flinch at all and could probably draw her own blood at this point.

Liz has only a couple Lab Techs that she will allow to draw her. Thank goodness Ronnie was working today!

SO much blood!! We had to split up our Lab trips, as so much is needed for the 17 tests that are being run. We'll have to go back next week to finish.

Next on the schedule was the Cystic Fibrosis sweat test. The whole thing is fascinating and Liz decided this will be the topic of her Science Fair project this school year (which is why I took the pictures).

Two probes are placed on the skin and currents are passed for 5 minutes. Liz said it felt itchy and a little prickly....

...this "watch" is worn for 30 minutes. The sweat collects into the coiled tubing, which is clear, but turns blue as sweat collects....

...the coil is unraveled and the tubing is emptied into a bottle....

And there you have it.... a tiny vial of sweat that will tell us Liz does not have Cystic Fibrosis.

Around 5:00pm tonight, Liz started heaving and having a lot of stomach pain and we wondered if we'd end up in the ER. Her Zofran seems to have kicked in though, and for now we are home. In perfect timing, a wonderful family from our church, who we have never met before, stopped by with this huge bunch of balloons. Aren't they fun?! They brought many smiles on a day that was pretty yucky for Liz.

So that's our exhausting, three-hour-lab-trip, retching, bloody day. At least there were balloons at the end of it! : )

Thursday, October 20, 2011


You think you have had a bad day? Well at least you aren't she's had a rough day! Admittedly, maybe even a bit shamefully, I had this exact thought today after running into a girl I went to high school with. Bless her heart, she had an eight week old baby and shared that her husband had broken both of his arms when the baby was just two weeks old. Both. Of. His. Arms! Girls, can you even imagine how awful it would be to have a newborn to care for and a husband who, rendered just as helpless and needy as the baby, was also requiring care? Awful!
As I walked Liz to the radiation department for her xrays I thought, "well, at least I'm not __________!" That sounds so bad, but sometimes perspective is gained when we see how others are suffering in some way. So, as much as it exhausts me to care for Liz sometimes, at least I am not caring for a newborn and a husband with two broken arms! Right? Right!

Talking about perspective and how people view things, today Mr. Jersey Shore made me laugh out loud... My eye is now totally blood red. Not just a little bloodshot, but a mess of red. Anyway, I went to an eatery to pick up pizzas for the girls' class and the owner, who is Jersey Shore aged about 20 years, says in his awesome accent- "Hey, are you alright? Cause, uh, you're eye is looking a little red there." I was dying because "a little red there" is the understatement of the decade. I think he was wondering if I was hemorrhaging right there at the register and wanted to make sure I was off his property before I did. So funny!

Today we met with the Pulmonary doctor who also happens to be an Immunologist. I liked him very, very much. I also feel like a schoolgirl just thinking about him because man, he is so handsome and has a Soap Opera voice. I have mentioned how Dr. M, the Infectious Disease doc, has been referred to as Dr. Cute a handful of times, but Dr. R is Doctor Ridiculously Cute. I realize I also sound like a school girl speaking about his looks, but when you are jumping doctor to doctor, week after week, a little silliness (and truthfulness at the beauty of Dr. R!) goes a long way. Anyway, I am happy to have him on our team...and not just because he's dreamy.

There is TOO much to say about what was discussed, so I'll keep it simple. First, the Cystic Fibrosis test will be tomorrow morning. This is a sweat test which is exactly what is sounds... they will stimulate sweat, collect it and check for chloride levels. Dr. R does not think she has CF, but agrees we need to rule it out. In addition to the CF test, she will have labs drawn to test for 18 different diseases/disorders/abnormalities. It is so much blood that Dr. R recommends splitting it into two Lab visits.
Based on labs, we now know that Liz has a new diagnosis of Immunoglobulin Deficiency. For my medical fam, her IgA level was 40. Being Ig deficient could be the cause of many of her symptoms (excluding her GI issues related to all her surgeries), as the deficiency leaves your body without the antibodies needed to fight infection. We are waiting for results from further tests as the doctor feels she may have more than this issue going on right now.
Tomorrow she will start a diet called the Elemental Diet. This is a diet used either by mouth or through iv or feeding tube, which will allow her gut to rest. Her main intake will be an amino based formula that is made of digested fats, minerals, etc... her body won't have to work because it has already been done for the formula, thus giving her gut time to rest and heal. This diet is only done in serious cases where a doctor thinks it is necessary. In addition to the formula, she can eat a small amount of rice, rice bread or root vegetables. This will only be done for two weeks and is done under the physician's care....

More tomorrow....

Tuesday, October 18, 2011


You should see my eye. Those who have had the pleasure of seeing me this week can attest to the fact that I am a bit scary to look right eye is literally bloody-red where any hint of white should be. Not pretty to look at. I think it is from a blood vessel, but it has gotten worse over the last four days so I am going to the eye doctor tomorrow...because I have so much time to spend at yet another appointment. I don't have high blood pressure, I didn't sneeze hard or cough, and I haven't had any eye trauma. Do you know what the other possible medical reason for a burst eye vessel is? Stress. That I do have.

Maybe my body is telling me something. Maybe it is yelling at me to admit how tired I am and how no matter how many smiles I put on, I am carrying stress and I should not ignore that.

Or maybe my bleeding eye is like a warning to people...I am bleeding inside! Who cares about the eye? It is my heart that hurts. My Liz is sick and as I watch her feel awful, take her meds, miss days and weeks of school, adapt to what is beginning to feel more like a new normal rather than a "bump in the road" illness...I feel like my heart is bleeding.

Monday, October 17, 2011


I like this picture. I liked it when I took it and I especially like it now because to me, this represents "before." Before that last surgery just a month after this photo was taken. Before Liz started bruising and acting so tired and having her hair fall out more than usual when I would brush her locks. Before she got sick. Because even though she has had years and years of stomach surgeries and procedures, she was never like this. She was never so sick. I can't stress enough to all the doctors and friends who are new to praying for her, how much Liz changed after that last surgery.
This photo is Elizabeth. Before.

Liz tried school today....and lasted the whole six hours! Her teacher is wonderful and if wasn't for her there is now way I would be able to feel comfortable leaving Liz. School has made her exhausted and she says she feels like she is sick (duh!), but oh my, how good for her little-big soul to get to be around friends today and have the normalcy of school!

She is coughing more than she was last week and her fevers, congestion and headaches persist, so the Infectious Disease doc, Dr. M (aka Cute Doc),and her Pediatrician decided today that the bacteria causing her sinus infection is not reacting to the antibiotic she's been on. So, they are switching the antibiotic. Normally not a big deal, but given the CDiff, a stronger antibiotic is scary to give her....which is why so many doctors need to talk about it before prescribing it for her. Please pray that her body fight the CDiff, as this medication for the sinus infection leaves her gut weak to it.

I mentioned the other day that Dr. M. was going to arrange for Liz to get into the Pulmonary doctor as soon as possible. He did make the call and speak to that doc and she will be seeing him on Thursday morning. She will also have the test for Cystic Fibrosis at that time. We have heard so many great things about this Pulmonary doctor and it is wonderful that he is also an Immunologist, which will benefit Liz, too.

Please keep praying for our Liz!!

Saturday, October 15, 2011

Woohoo and Boo!

Woohoo, I have had a wonderful weekend! My birthday was relaxing with a trip to the spa and then a yummy sushi lunch. Yesterday I had a three hour lunch with girlfriends at beautiful Fuego, and last night my sister had the kids overnight so Walter and I could go to dinner and a movie. I think I have had more free/me time in the last three days than I have had in the last three years. It has been wonderful and I am grateful for my sister and husband for helping to make it happen. To all of you who sent notes, cards or gifts.... please know how fun it was to feel extra special!

Now, for a bit of a boo... we met with Infectious Disease on Thursday afternoon. He is concerned that Liz presents in a way similar to a patient with Cystic Fibrosis. So, she will be tested asap. I pulled the doctor aside and asked if he was testing her just out of protocol or to cover his butt (I actually said that. Not my most proud moment, but I need honesty) and he said "No, I think there is enough doubt in my mind that we need to have her tested." So there you go. Personally, I don't think she has CF. For goodness sake, on paper she looks like she could have quite a few diagnosis', so I am not worrying yet. I will let the doctors worry or wonder for now. It usually takes months to get an appointment with the Pulmonary docs, but the Infectious Disease doc made a call and she will be seen much sooner.

She has been on the antibiotic for the sinus infection for 5 days now. Her symptoms are no better and in fact her cough is worse, so the ID doc will most likely switch her antibiotic. He is being unbelievably careful with the dosage and which drugs he chooses because we don't want her CDiff taking off due to the sinus infection meds.
As for the CDiff, time will tell how these antibiotics will effect her.

As Liz lays next to me napping at 4:00 in the afternoon, exhausted from a trip to the park, I am reminding myself of how this will be over someday. She will be well, she will have energy, she will be back to normal soon....I just know it.

Wednesday, October 12, 2011


First, I have to share with you about a special, generous event that has been planned for our family. On Monday, November 7th, Michael's on Naples in Long Beach is generously donating 50% of all sales (including alcohol) to our family. The money raised will be used towards our mounting medical bills.

For once, I am at a loss for words. Admittedly, the concept of needing help makes me uncomfortable. It is not that I am too proud or above accepting help...please know that is not the case. It is difficult for two reasons. First, I have always been "the person" who does for others, so it is odd to be on the receiving end. Second, the bills, and this fundraiser, are a real, in-my-face reminder of the reality of how long Liz has been sick and how we are still in the thick of her being unwell.....

Having said that, I am also at a loss for words to express how touched I am and how grateful I feel at the thought of anyone wanting to help us.

Jamie was my best friend through our awesome (if there was an italic to note sarcasm, I would use it for that word, here)years. I will leave out details, but it is easy to say that through a tragedy J went through in high school, our friendship became more like a sisterhood. I love her just as I love Megan and I would do anything for her. Though our lives have become drastically different over the years, time and space doesn't change the love of a sisterhood friendship. And so, Jamie has come alongside my family now, wanting to help us in some way. In an act of kindness, she and her partner, Kemery, have been working to put this fundraiser together.
So, if you are in Long Beach and want to join us, please mark your calendar for the evening of November 7th. I will post the beautiful invite with more information soon.

Elizabeth tried school yesterday. I accompanied her so that I could be there if she needed me. She wanted to try the school day so that she could do a presentation in class, make up a few tests she'd missed, and more importantly, have her picture taken. This girl won't miss a School Picture Day or photo-op no matter how sick she is!
She only lasted an hour and a half, but we'll consider that a success.
She is feeling worse now than she was late last week, so we don't know if she's caught the horrible cold Kate has, on-top of her sinus infection. Her pediatrician called last night to check on her and talked with me about Infectious Disease wanting to run some studies on her to find a specific reason why her immunity is not working as it should. She has literally been sick for months both with the CDiff and viral or bacterial respiratory stuff. Anyway, we have an appointment with the Infectious Disease doctors tomorrow afternoon. I am nervous they may admit her given how she is getting worse, but it is my birthday tomorrow and really, how can they admit her on my birthday?! : ) It is a good enough reason to keep her home, I think!

I appreciate you all for continuing to read this and continuing to care about us. Thank you!

Monday, October 10, 2011


My birthday is this week, and for ten years I have had the same wish...I just want the health of my family. I especially have always wished for Liz to be well. How in the world is it that I am still making this wish?

Elizabeth's CAT scan from Friday does indeed show a sinus infection. With this confirmation and given that she has been sick with all of the symptoms of an infection for three weeks, with no sign of improvement, the Infectious Disease doctor has given the go-ahead on her starting an antibiotic. We have no choice at this point. Remember, plans to start her on any antibiotics will need to be discussed with an Infectious Disease doctor for many, many years to come. Antibiotics throw off the normal flora in our gut, and for Liz, this means the CDiff toxins are given fuel to grow and overtake her intestines and colon. She gets CDiff when she is on an antibiotic. Plain and simple....yet so, so complicated all at the same time.
So, tonight she will start an antibiotic under the guidance of her doctors. I actually am tearing as I write this because I can't believe we're doing this already. She just can't stay well long enough to give her little body a chance to get strong and have the upper hand at fighting all this stuff.

Over the past few years, I have told the doctors, mainly the surgeon, to not tell me what small percentage of patients have x,y,z happen. If we are told only 2% of patients have a complication- Elizabeth has been that 2%. Time and time again. I now feel like adding the phrase "We do not want this to happen" to the list. Please doctors, don't say "we do not want this to happen"....because if you do, it does.

I can't express how scary this is. Please pray with us- that her body will fight the CDiff as the antibiotics work to fight the infection. Such a scary, scary mess that I want to just wish away.

Friday, October 7, 2011

Flower Friday

Liz worked really hard this morning on her schoolwork. After so many days home, she definitely wishes she was at school rather than here with me! As she has watched me do chores, errands and manage phone calls each day, she actually said "Is this what you do all day when we are gone?" I answered yes and asked what she thought I did....she answered "We think you go to Target and PTA stuff every day." Hmmm, something like that. Today she was frustrated and teary by 10:00am, and though she was serious about getting work done, she was not happy at all. She was also not looking forward to a trip this afternoon to the hospital for her CT Scan.

SO many meds! Most are taken three times a day. Thank goodness Liz has no problem swallowing pills and for the most part cooperates with taking them all.

Look at this Miss America-type bunch of flowers! Jill Reyes, you are crazy....and Liz says you spoiled me! This unexpected gift absolutely made our day! How can you not smile with a bouquet of flowers this big?!

Is flower arranging considered a 5th grade subject? Liz spent 45 minutes arranging all of the flowers. It was such a nice break from homework and a distraction from her tears (she was super teary today!).

The unexpected flower delivery by sweet Jill was just what we needed today! Thank you, thank you, Jill, for brightening our day and filling our home with beautiful flowers.

...AND, lastly, Kaitlin MADE the New Wave Club Volleyball team! We were so very proud of her for even trying out for the team, and now we are happy for her. It will be great for her to have something all her own. I love, love, love my Kate.

Thursday, October 6, 2011


I know people with life-threatening illnesses. I have shared with you about sweet little Alyssa who beat cancer only to end up contracting a virus that left her blind. I am amazed at a fellow Board member at the hospital who is always happy even though she carries the burden of caring for her son who is deaf, blind, immobile and unable to eat by mouth. All such very difficult things to live with....forever. I think about all of these people-and others like them-often. How lucky, how blessed am I to have my health and for my family to have theirs?!
And still....these days that find us losing a little bit of "normal" a little at a time make me start to lose sight of just how lucky we are. Because when Liz is sick and only getting sicker as the days go by, things seem like they may never get better. What if she is sick forever?

Today we were back to the pediatrician's office because after 2 weeks if this respiratory-type illness, Liz's cough is worse and her headaches are making her hold her head and roll in pain. The doctors are pretty sure it is another sinus infection but we are unable to start her on an antibiotic as would usually happen because of the CDifficile her body is already fighting. Tomorrow she will have a CT scan to confirm she does indeed have the sinus infection. If she does, the Infectious Disease team will take over, most likely starting iv meds rather than oral antibiotics.
Her urine that tested for protein on Monday and was sent to the lab to confirm, came back showing she is dropping protein in her urine (+3 for my medical family). She left another sample today and we should hear tomorrow if today's sample has protein in it or not.
The poor girl just feels sick and so very tired....and I am over it all for her.

School is not happening; at least she isn't attending school right now. Her teacher can cofirm for me, but I think she has only attended three days so far this year. I never thought we'd get to the point where she wouldn't be well enough for school. It is pretty sad, actually.

I wish I had more to say or a better entry to post, but I just don't have the words. Some ask me how I am doing with it all..... um, in four hours tonight I made dinner, cleaned the girls' room, mopped the whole house, gave Jackson a shower, did three loads of laundry, cleaned my room and my bathroom and helped Liz with school work for an hour. If I am honest I will admit that all of that frantic work means I am stressed, as stress makes me clean like a crazy lady.

Trying to keep in mind that this won't all last forever. At least I don't think it will.

Monday, October 3, 2011


This is a short, and very choppy update.

Liz tried school today....and only lasted 40 minutes before having to be picked up. I took her to the Pediatrician because she's had this latest viral-thing for over a week and her cough and fatigue is worse. Her doctor thinks she may be developing a sinus infection, so she's on a new steroid nasal spray (which now puts her at 13 meds a day) and we'll see if this helps. If it doesn't get better in the next few days, she'll have a CT scan to confirm the sinus infection. If that is the case, Infectious Diseases will take over and manage the treatment because it is just so, so risky for her to be on any antibiotics right now as antibiotics fuel the CDiff toxin. I always say...this is such a cycle and I am tired of spinning 'round and 'round.
While at the office today I told the doctor how much more pain and nausea Liz has had the past three days, so she had Liz leave a urine sample....which showed her to have a 4+ protein urine reading. There is room for error when done in the office, so the sample was sent to the hospital lab. We should find out tomorrow if this was just a false positive reading, or if she truly is dropping that much protein in her urine and this is a sign of another one of her systems being sick. That would just devastate me, so I won't even go there until I know if there is something to worry about.

The pediatrician spoke with the Infectious Disease doc and the GI doc this afternoon and they agreed that if I feel comfortable, I can keep her home for now, pushing fluids and making sure she is resting. I will do anything to keep her out of the hospital and so we are home. We pray her virus is not a sinus infection and that she doesn't develop pneumonia as the doctors have worried about.

Thank you to everyone who passed on our prayer requests yesterday. To all of you, both friends and those we have never met, I am unbelievably grateful for those who care about Elizabeth and pray for her health. Please know how much we appreciate you.

Sunday, October 2, 2011


On a friend's facebook page, I read a message to her that said "Someday this will all be a memory" (in reference to her son's hospitalization due to a post-op infection). That simple sentence struck me -it literally made me take in a deep breath- and has been echoing in my head for days.

I keep thinking when or even if this will one day all be a memory; if there will be a day when Liz won't have a "special tummy." Honestly, I don't think so. She has had to deal with her stomach and the surgeries, procedures and pain it brings since she was born. That won't be a memory.
But the awful year and a half will hopefully-prayerfully- be a memory one day. This day-to-day sickness and the blood issues and fatigue and constant infections....gosh, these are the things that have been the most difficult and the things that make me wonder when they will all be just a memory. She is only 10 years old and I just want it to be a memory for her.

Tomorrow we should hear results from the samples left Friday. These results will be a bit of a turning point for us, so I am very anxious to hear. She has had much more pain this weekend and just does not feel well at all. On top of the stomach pain form the CDiff, her poor bottom hurts and the respiratory virus she started with last week is worse. We are praying her worsening cough isn't a sign of the start of bronchitis or pneumonia. Having to take an antibiotic for either would be the worst thing for her right now, as that would just fuel the CDiff toxin.

A friend asked if Liz knows how many people are praying for her....she has an idea, but in her young mind it is hard to grasp what is unseen. She knows that her name is in our church bulletin and members are praying for her daily. I tell her that many friends are praying and she hears from some of you who tell her so.

Would you please, please pass on a prayer request for Liz? Maybe even pass on the blog address so people can be led to prayer on her behalf? It has been an awful, awful six months and I am over the way this infection has changed our lives and made my Liz feel so sick. Liz is amazing and has been so very tolerant, but she is tired and I am asking for prayer....from anyone. Thank you.

Now.....for some smiles:

My Kate made me so proud yesterday as she tried out for Club volleyball. I would have been proud of her just for conquering her fear and nervousness, but she was also great out there with her skills and I loved watching her!

Jackson had his second day on the ice for hockey....and this time the coach gave the kids pucks to move around the ice. Jax had fun and when my sister told him he was going to be better than Uncle Travis, he shrugged and gave us all a "yeah, what can I say? I'm good!" look.

The girls convinced Jackson to give them foot massages today (which I don't understand at all given he was the one with sore feet from skating). After, Liz told him "If you were older and you weren't my brother, I would maybe let you be my boyfriend because you give good massages and you are a funny guy!"

Kate has told Liz more times than I can count "If you don't quit being naughty, you're going to end up in Juvi!" How does she even know about Juvenile Hall, let alone its nickname?

And lastly.... Super Spence and our Gooches (sounds like a name for a band, Holly!) are leaving for Walt Disney World on Tuesday! It seems like he was just in the hospital, sick from stage IV cancer and fighting so hard for his life, and now....that is a memory and the family will experience 10 days of Disney magic through Make-A-Wish. Enjoy your wonderful trip, Gooch family! Spencer, you fought so, so hard and we are grateful for your victory!!

Liz with Spence during his visit to California in July. These are some tough kiddos.