So much to update; more facts than anything else right now as I am updating mostly so that those who pray can know specific things to pray for....

Happy news first- Today the girls were able to go to their new middle school and get everything done that was scheduled to happen on Thursday. Yearbook photo was taken, school id, uniform pieces purchased, books now in their possession.... super productive. My good friends Liz and Lynn helped me make going today rather than Thursday (the 6th graders' assigned day) possible and I am very grateful! Liz and Kate feel more prepared for starting school and Liz was so cute as she wore her school id around her neck all day. We just want Liz to be able to do normal, planned things and her hospitalization was going to get in the way of this, so it is wonderful that we were able to allow her to have today.

Liz's pediatrician (the GREAT Dr. L.) called me today and plans have changed a bit. She and Liz's GI doc have decided that it is time for the G-tube to be placed. Both of them have been trying just as hard as I have not to have to go ahead with the G-tube, but they say it is time. For multiple reasons, we didn't rush Liz in to be admitted today, and we are trying to work out details. We all feel a time crunch though as school starts two weeks from tomorrow, so tomorrow we will talk more about whether we are admitting Liz in the next two days or holding off until next Monday or Tuesday. Usually a Gastroenterologist does the Gtube placement surgery, but because of Liz's past surgeries, she is a more complicated case. The team is asking her surgeon his opinion on having a surgeon do this instead of GI. Liz only wants (actually, she is demanding he do the surgery or at least stand in the operating room to "watch Dr. S and make sure he does everything right") her surgeon to touch her in the OR, so I'm actually hoping that is what ends up being decided on, even if it means we wait until next week.
As if that all isn't complicated enough, we have also called Children's Hospital of Boston. They have a Motility Center there that performs the motility procedures and tests that Liz needs done. If they can see her sooner than CHLA can, we will go there. CH of Boston also has a white blood cell disorder clinic, and we'd be able to get her evaluated by them while there. Hopefully I will hear back tomorrow and have an idea of what the time frame is, and if they can see her in the next month or so I will start the enormous task of organizing getting records sent to them and physicians here to communicate with the team there.
The idea of school makes me physically ill because I know Liz is going to miss so much of it already and I feel the stress that I know she has about that. When it comes down to it, we have to get Liz well and we are just going to have to take one day at a time when it comes to school.
This is just another sucky part in the whole picture. Add in that her twin is going about life doing all of the things she would like to, and Liz must be very sad. Dr. L talked to me today about her concern (and she said the GI shares the same worry) for Liz's body image and emotions. This concern is not based on anything she has seen or heard Liz say, but instead on the fact that Liz will of course have thoughts about the G-tube altering her body, having an identical twin that is growing and developing in ways she is not, and also recognizing that the tests she will have done leave no room for modesty and are uncomfortable.
Liz already has a wonderful therapist, so we will just watch for signs of depression. Today Liz's therapist encouraged her to journal (an on-going urging!!), and I suggested a blog, so we'll see if Liz decides to do that.
We told her today about the G-tube, and she tried to be stoic. I asked her why she doesn't act sad often about being sick, and she said "Because I won't let it control me. I know I will get better and I just won't be sad all the time and let it take over my life."
What a grown-up answer. Too grown-up.

She has many, many questions about the surgery and what will be happening over the next few weeks. Some answers I have, many I do not. Child Life will work with her once she is admitted and will explain things to her ahead of time. I am hoping to arrange a meeting with her and another young girl who has been living with a G-tube, so that she can ask her questions and hear how normal life is once you get used to having the tube.
 I also promised Liz that I won't sign-off and consent until she has all her questions answered and feels comfortable with the surgery.
At therapy, we reminded her that feelings are OK to have and being sad or crying is fine to do.....and at that point, she broke down. She cried about her fear of the tube, missing school, wanting to be better, and her sadness over Collin's passing (which carries much more than her sadness over the loss of sweet Bubba. I know his death scares her).

So much confusion, sadness and a bit of chaos. Amidst all of it though, I feel comfort in knowing some things:
* Dr. L and I are fighting the same fight in that we both want Liz to have as much normalcy as possible and we want to be as conservative as possible in what we put her through
* Liz is strong and has amazing faith and the mindset that she will be better one day. Attitude is huge when you are trying to get through something so big and also in healing...and she has a great attitude.
* I have a wonderful family and the sweetest friends who offer help and encouragement.
* I know that prayer changes things, and I know that Liz has many who are praying for her.

It is unfair and difficult, cruel almost, to see our Liz have to endure so much for so long. There is no way to justify any of it or make sense of it, and that is upsetting in itself. Still, we can't wish it away. We can only pray, and I can  just try to make the best informed choices to help our girl get better. In the end it as simple and complicated as that.

This stunning girl has no idea what is headed her way and that breaks my heart. We met with the motility specialist at CHLA today. There are so many things I could report, but I don't feel like "talking" now, so I will keep this brief.
Liz needs some studies done at CHLA to help determine what is the cause of her motility and chronic impaction issues. She'll be admitted a few days before the day of the tests in order for them to do a clean out and ensure that she is clear of any stool. She'll then stay for the testing day and then to recover. She'll have an Antro Duodenal Manometry study, Colonic manometry study, and a repeat esophageal manometry study and repeat gastric emptying scan. This information cannot be gathered any other way and we need this done to diagnose the issue and offer her some relief. Unfortunately, we can put men on the moon, but the manometry studies are not done at many hospitals in the country, and so there is a waiting list that is months long. So unbelievable frustrating. We must wait about two months before she can get in. Ridiculous.
Because it is going to take so long to get the tests done, and because she is impacted now and having so many issues from the impaction, her Pediatrician wants her admitted this week to our home hospital for placement of the NG tube (down her nose) and for a clean out. She just went through the same things in April; I can't even think of telling her tomorrow that we are going to make her do the same painful and uncomfortable things again this week.  Using the NG tube means that they can give Liz the huge amount of clean out routine through the tube rather than her having to drink it all (which is so difficult for her given how small her stomach is). She'll be on a liquid diet, so the NG tube can also help for getting extra calories back into her via formula.

This is an NGtube

Her Pediatrician also thinks it is time for the G-tube and wants it to be done this week. The G-tube is placed surgically in the abdomen, and is semi-permanent. Liz would have the G-Tube in for months or years, and would receive formula feeds at night through the tube, as it allows access right into her stomach.
I want to avoid the G-tube at all cost, but it is looking more and more like we don't have a choice. I am asking for a compromise and would like the team to consider leaving the NG tube in until we get the studies at CHLA done, as those results may show that she needs tubes other than the Gtube that feeds into the stomach. BUT, I know Liz will NOT want to come home this week with an NG tube because she will have the tube coming out of her nose for months, and she will object to that in a huge way.
Such a mess. Weighing options and risks is too much. It is all just too much and I am in a really bad place tonight mentally as I just want this all to get better.
I actually voiced the words "I can't do this anymore", and I feel guilty for even thinking that. I wonder if other moms like me have ever said those words, or if I am the only one who has such weakness in this situation.
We are running a race with no set finish line; I just wish we knew the finish line so that we could cross things off and know that Liz's hard work and bravery would bring recovery at some point.
I will share more later. For now, just please pray for our Elizabeth.

"I want to be like her when I grow up!"

Tonight I had a date with my favorite volleyball player- just the two of us. I am trying so hard to make time alone with Kate and show her that I support her passion....volleyball. I have been super lucky to have the help of family so that I can attend all of her tournaments, with the exception of one, even when Liz is in the hospital.
Kate is like her daddy- she is quiet and reserved until she feels like opening up and letting loose. She is silly and has a great sense of humor. She doesn't say much, but what she does say is usually very important, smart or poignant....or totally uncalled for (again, just like her daddy). Kate isn't a hugger, but when she is ready or up for it, she will snuggle into me like a baby. I am convinced she is smarter than me, and so is she, so I do double-time keeping her sass in-check. Kate totally teaches me to listen, wait, observe, and she reminds me to be intentional when I speak. I am confused by her, spend a lot of time trying to figure her out, and I adore her.

Anyway, tonight we attended the Long Beach State Alumni game. Before you can visualize our night, you have to understand that LB State athletics is in my blood- by association. I spent years and years of my childhood sitting in the bleachers of the Gold Mine and then the 'Mid back in the days when Men's and Women's basketball and Women's volleyball was a sell-out each game. My grandparents were and are active boosters, and my grandmother ended up working for the Athletic Department, so our family followed, and whether it was a school night or not, the Ramseys were there. I was laughing with my grandma tonight about how I would pray for no over time because doing homework in that crazy, loud atmosphere was impossible (but expected!). I was never an athlete, so I did not care much what was going on on that court and most times I was picking out the cutest boy in the crowd or running the bleachers with Alexis and Michael McDonald. Looking back now, I appreciate those years in attendance, because great friendships were made.
Tonight it was fun for me to watch players I'd watch play years ago and it was awesome to stare at Kate's face as she watched her favorites.
My grandma- my Amie- is a fixture at LB State. Tonight for example, she was like a queen holding court as she sat in the stands, and people came to her one by one to say hello. My Amie is the most caring and kind person (can you tell how proud I am that she is my Amie?), and because of that she has always given the players the smile, tenderness and love of someone who cares about them, not just their play. In turn, players like Misty May and Danielle Scott (who lived with my Amie during a time while playing at LB State) care very much for my Amie.

A date night with my Kate, the chance for her to finally meet Misty and also Danielle, and time to watch how much my Amie is admired by so many. Such a great night.

First try at a picture....

Kate's T-shirt, now signed by Misty and Danielle. We stood talking to Danielle in the parking lot
for 10 minutes, but I totally forgot to get a picture. Bummer.

MUCH better. I saved my tears for the car, but seriously, watching my Kate meet someone she wants to be like when she grows up and considers a role model made me cry.
Kate said her heart was beating different after talking to Misty...how cute is that?!

Liz Is In!!

So much blogging to catch up on, but will keep this short tonight. For those who are following Liz and praying, we had a breakthrough of sorts today.... Liz's original appointment with the Director of the Motility Center at Childrens Hospital Los Angeles was scheduled for a month from now. That is just way too far out especially now that her condition is worsening and the last-resort-drug is no longer an option. Liz's Pediatrician- my tiger, as I call her- called the CHLA doctor this morning and explained Liz's case and the urgency needed and.... we are in for Monday morning!!!
So exciting because we just want to get Liz's horrible impaction and motility issues figured out. She is so much worse than she is ever been that way. The films from Monday show that she is STILL just as impacted as she was a few weeks ago. Even after all of these cleanouts, she is impacted; something is not right and the GI team at Miller's is out of options at this point. Also, with the way her condition is progressing in that aspect, we know she'll end up back in the hospital. We were so torn on which hospital we'd take her to considering she isn't yet a patient of the CHLA motility doctor. Now though, we would know to take her to LA. I cannot express how grateful I am for Dr Lee and for her mighty roar- she just would not accept making Liz wait and end up with an admittance at our hospital where there are no other options. She so badly wants this under control so that Liz at least has a shot at starting school (of course there is the immunity issue to deal with too in regards to school). Our eleven year old cannot start school in a diaper and it is craziness to keep putting her through a whole clean ot (including enemas) each week. Something has got to give. So, Monday it is for CHLA and then Tuesday she has Hem/Onc here in Long Beach.
Monday's labs show that she is still pretty anemic and her platelets are the lowest they've been in a long time. No wonder she is pale and bruising with petechiae. We hope those counts will look better on Tuesday.
We just keep chugging along.....

Joy Comes In The Morning

It has been one of the hardest weeks I have ever had, and it just got worse as the days went on. Frustration mixed with serious fatigue gave way yesterday after learning of our friend's passing and I cried all day. Bubba losing his life saddens me deeply of course, but even more, my tears would not stop at the thought of my friend's broken heart as she aches. Any mother can only imagine the unspeakable pain Julie is suffering.
I tried to hide my tears from the kids, but that was for not. Telling them about Bubba was difficult, especially for Elizabeth, but it gave way to a great talk. It is very sad that because of Liz's situation we have met and made friends with children who are very sick and my children know about things and deal with things that should come into their lives when they are older, but at the same time I can see how the exposure to pain, loss, and sadness is shaping parts of them for the good. My babies know that death can happen- even to children. My kids know that heaven awaits and that we will all be together again after death. Liz cried and said that she is so worried that Bubba will miss his mommy, and then quickly answered herself by saying "But he will be with God and that is safe."
Tough, tough stuff, right? It is life though, however difficult and unfair and devastating. The kids are more compassionate and loving, and, ironic to some, they have a relationship with God that is made stronger as they are exposed to such hard things.

So, today was a new day and there were less tears. Tomorrow Walter is off and I feel a mother's-heart- need to be close to him and the kids. I would love to get out of town for the day if Liz is up to it because I think we could use a break from this place : )

The latest on Liz is frustrating. After deciding to go ahead with the new drug, then waiting ten days for our insurance company to authorize it after much fighting, paying a yucky amount of money for it, and then praying I made the right decision.... Liz took the first pill on Tuesday night and within 30 minutes started having burning in her chest. Over the time period of another hour the burning turned into pain, then chest tightening and some wheezing. She ended up in the ER for the adverse reaction. This reaction occurred in less than 2% of patients during clinical trials, and it can reoccur with subsequent usage but may get better over time. Because Liz is so little (smaller and younger than the over 18 years of age that the drug is approved for), her doctors do not feel it is safe to use it again.
UGH!!
So, we are out of options for now in terms of treating her motility issues. That is literally what her GI doc said, not just my opinion. She is scheduled to see the director of the motility center at CHLA, and we are hoping she will have more to offer. For now, Liz will visit Radiology on Monday to rule out partial obstruction.
In addition, labs have been and will be done. Her GI was worried at how pale she looked yesterday, so we needed to check counts. Also, Liz has had retching almost every day for the past week and her nausea has increased over the last few weeks. A few months back, Liz had some awful liver numbers come back during routine liver function labs. The numbers were new to me, so didn't freak me out as much as they made her docs scurry. Repeat liver labs looked better, so we agreed to recheck in six months unless she presented in a way to give reason to repeat sooner. Her GI decided they should be done now; so for goodness sake, we are praying her liver looks fine from these labs.
Her doctor ordered another medication to hopefully help with her nausea. We'll see about that.

I voiced how frustrated I am; I can see this train getting ready to crash, and there is no way I know to stop it. Liz is following the same cycle of things escalating and then getting to the point of ending up admitted and all heck breaking loose. Gosh, it is tiring and difficult to keep "putting out all these fires" over and over with Liz's health. Things weren't like this before. A few years ago, it wasn't so hard for her, her body was not so broken.
I also voiced how we all just want her to be able to go to school in September, but that she is so tired and getting so sick after days of doing simple and easy things...nothing compared to a full day of school. How in the world is she going to be able to do that?! Not to mention appointments that we are already scheduling for September. Missing class in Middle School is a big deal, and yet we have no choice on days we have to go Los Angeles for appointments. I am trying to remind myself to take one thing at a time, but I just want her to be able to have a normal school life, and instead we are going to need to rely on her 504 plan (a document that lays out accommodations to be made and work modification for school).

Our prayer requests for the immediate are:
* For Liz's counts to look good. I want great numbers on her liver labs, and I'll settle for stable white cell, neutrophil and platelets.
* For her liver to look alright and not be a factor in any of this.
* For there to be no visible partial obstruction
*For her nausea and retching to get under control. It is upsetting and extremely painful for her when she retches; also, for her Fundoplication to stay in-tact, as each time she retches, she runs the risk of blowing that wrap (the knot that her stomach and esophagus are tied in is called a "wrap" or Fundo).
* PLEASE pray for our friends the Presley family as they deal with their deep pain after losing their Collin (Bubba).

Thank you for continuing to pray for Liz and encourage our family.
{Weeping may endure in the night, but joy comes in the morning} Psalm 30:5

Bubba

Today is my Jackson's birthday and I will post about him tonight. This morning I come to you to ask for prayer for my friend and her amazing family.
Late last night, Bubba (Collin) Presley passed away unexpectedly in his sleep. Bubba had a contagious smile, amazing strength and a life that taught us all about perseverance and happiness.

I wrote about Bubba's mommy, Julie, in the past and shared how I was always struck by her strength as she literally held Bubba up and cared for him with unwavering strength and a smile on her face.
Circumstance brought our friendship together, and our family has been touched and uplifted by knowing the Presleys.
So many of you encourage and pray for my family, today please pray for Julie; Jason; Bubba's biggest cheerleader, sister and best friend Regan, and the rest of his family and friends.

It is going to be so difficult to tell the kids, especially Elizabeth who knew Bubba most and considered him a friend and fellow little hero. We will have a dance party in the car - as Julie does with her loves- and we will watch buses go by at lunch as Bubba LOVED buses. Mostly, though, we will forever think of a great smile as a "Bubba smile" and we will remember him as a friend who touched our hearts and inspired us to be better no matter what.

July 4th is Bubba's birthday! This year was super fun Team Bubba party!!

My sweet friend Julie is such a warrior mom.

Liz and Bubba have many of the same doctors and it is always fun to see
friends on hospital days.

The best Bubba smile. We will miss you, sweet boy.

Prayer Requests

A very short post to update: I have been in a horrible funk and have not felt like blogging. That, mixed with waiting for change in Liz before updating, has contributed to a long lapse of posting.
It has been a long week. Poor Liz has gone through two more clean outs and it has been frustrating to try to manage her care as both her GI and Pediatrician are on vacation. The on call doctors never want to make a serious decision, rather, they manage things via the nurse and give just enough guidance. The new drug still has not been approved by our insurance company which makes me SO angry! They have asked to review her GI doc's chart notes, proving that this last resort option is needed. I could vomit thinking of how we put her through the horrible clean outs and don't have the medication to start. These insurance companies don't care at all about the patient and I have no doubt that they would be happy if Liz's body just gave up and they didn't have to worry about her claims anymore. The fact that my baby suffers while we wait for their "mercy" is sickening.
So, this week we just kept up with her heavy dose Miralax and managed her nausea with continuous Zofran. I have felt stuck for sure, but I am glad things didn't escalate to the point of needing to admit while her GI has been out of town.
 Her doctors both come back this week and we'll see what happens.
Already planned, she will get labs done this week. It has been 4 1/2 weeks since her last set of counts which is the longest we've gone in months. This happened because we cancelled a Hem/Onc visit here in Long Beach due to waiting for CHLA Hem/Onc's notes. Counts are done at every Hem/Onc visit with a simple finger prick rather than drawing blood, so we'd just planned on getting counts then. When that didn't happen, her Pediatrician and I agreed to wait because we don't want to draw blood anymore than we have to given Liz's anemia. This break means that we have been living in a blissful state of ignorance. For all I know, her white count is still super low and she's neutropenic, but not knowing gives me two options- 1. Keep her home and in a bubble. or 2. Act like she's not immune suppressed at all and let her out and about without any safety net (mask in crowds, avoid movie theaters, malls, church...). I have opted for #2 this week and I've just let her go. I even let her play dodgeball with her youth group at church on Friday. Who knows if her platelets are low....bring on 8th grade boys pegging her with balls over and over as she dove on the gym floor : )
Elizabeth is scheduled to go to Fashion Camp this week! VERY exciting. My sister saw this camp highlighted on the morning news and it is perfect for our little fashionista. Megan wrote the camp director and explained Liz's situation, and they generously offered a discount and said they will be happy to have her. So, she'll go Monday-Friday form 9-12. Liz is pretty nervous because she doesn't want to have to wear a diaper and doesn't want to get sick there, but she is also excited. We are going to make this work!! If you are praying, please pray that she is feeling well and can enjoy this awesome experience.

Our prayer requests this week are-
* For Liz to be able to enjoy camp.
* For her counts to look better than they did after her last labs. White count and ANC to be higher, meaning that she is not extra susceptible to infection right now. It would also be great for her Prealbumin and iron counts to look better.
* She's lost some weight, so for her to gain some back this week.
* We need the drug approval, so we are praying for the insurance company to come through. We are already a week behind when she should have started the drug.
* Avoid admitting to do NG clean out before starting drug.

I have many pictures to post from our awesome vacation and the girls' birthday, and I hope to get to those soon. In the meantime, here is a photo of our happy girl, at the beach with Harper.

One of the things I love about Liz is the way she has learned from an early age to
accept her body. It hasn't been easy as by nature, she is a little diva when it comes to her appearance. BUT,
look at her in that two-piece. Her tummy has thirteen scars, including one that runs from sternum to belly button, and she doesn't care. Go on, girl!

Harper and Lulu. What a fun couple hours we had in the sand while Kate had her beach volleyball workout.