You Are My Race

http://www.youtube.com/watch?v=OTg1n95--KE

{There is a favorite children's book of mine called You Are My I Love You (many of you have received the book from me as a baby shower gift) and currently lines from the book are making their way around Pinterest and facebook. Seriously, the beautiful words in the story get me every time I read it to one of the kids.
Two of the lines in the book have touched me in a new way over the last few years as they make me think of the journey Liz is on....I am your finish line, you are my race.
I am your way home, you are my new path.
I have said more times than I can remember and I have heard other mamas echo the same, that this feels like a marathon we are running with our sick children. It is exhausting and difficult and I wish we knew where the finish line was. I'm starting to understand that there may be no finish line for Liz medically. She is always going to have to deal with her health and this marathon is going to be a lifetime race.
What I can do as her mom is be her finish line, so to speak. I can cheer her on. I can advocate for her and rally for her so that there are mile markers she can see and accomplish and overcome along the way. When she gets too tired, I can pick her up and carry her until she is ready to run again. I can open my arms and wave her in and towards her finish line- whatever that may be.
We never would have chosen this path, but I will help her find her way. }

The last week has been difficult for Liz. Since my last update, she did end up starting on an oral antibiotic as her Staph just wasn't healing and her sinus infection had gotten pretty bad. We are now just praying that she stays clear of CDifficile infection as a result.
In the past week she has had two clean-outs due to impaction. It is just this never-ending cycle of impaction, dehydration, soiling, not eating, and back around again.
Her stoma (GTube site)  still isn't looking good or healing the way we'd hoped. She had an upper GI last Friday that showed the tube is placed well in her stomach which is good news. Her surgeon is thinking we may have to change to a new kind of tube, but I would hate to do that as right now she has a low-profile tube which means she has a little "button" sticking out of her belly and I hook her to the tube during her feeds. The new kind of tube would be a tube hanging out of her all of the time. Not ideal. The GI doctor and the amazing GI nurse clinician at the hospital are working to see how we can get her into see the inpatient wound care nursing team, as they know tricks and have supplies that even most docs don't.
She has declined in terms of her colon over the last couple weeks. We have started a new plan of weekly clean-outs and enemas in addition to her meds, but two of her doctors have asked me to seriously consider surgery to do a Cecostomy and Appendicostomy. I cannot even go there right now.
Today I took her to see her pediatrician because she has been short of breath over the last few days....alright, more like I noticed it about 5 days ago. She has been saying that she feels dizzy at times, but that is not a new thing and is usually caused by dehydration. The shortness of breath is new though and it has gotten worse, so I took her in..... she has partially collapsed lungs. This has been caused by the stomach pain she has been having and being so full of stool has caused her not to breathe deeply enough to really get air through. She is in no distress and she has no wheezing or chest pain other than when she blows out or takes a deep breath. She is using the spirometer every hour to move those lungs and we  are doing breathing treatments every four hours to try and prevent pneumonia (she has a bit of a drip and congestion now and she has had pnemonia before and is susceptible). She'll be re-evaluated on Thursday. I am sure it will be better by then.
There has been discussion about her next bone marrow aspiration. GI said she should be ready in the Spring to have it done, but her Pediatrician wants to wait until the summer. We want to make sure that if her improved nutritional status is going to help her marrow we give it enough time to work and prove itself rather than testing too early and thinking it hasn't helped in marrow recovery.
Next week she will see a Genetics and Mitochondrial specialist for the first time at the request of a few of her doctors. Honestly, I am too covered in poop (figuratively, but literally too) to give much thought to that appointment or the reasons we are being sent there. I will deal with it on that day.
School.... is up in the air. I need to decide what to do about it. She missed the week before the two week Christmas break and she isn't going back this week. We just need to decide what will be best. For now, she is my shadow again.

Thank you to those who continue to pray for her and support us on this race. I hope you know how much we appreciate you.

Dear Elizabeth Claire....

http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related

Elizabeth Claire,
I know you are sick of being sick. I know I can't feel the exact pain and sickness you feel, but as your mommy, trust me baby, I feel your suffering in ways only you will understand once you have a child of your own.
Every pain, every needle, every excruciating procedure, every minute of lost modesty or embarrassment, every time you feel scared or angry or lost- I feel it as an ache only a mother's heart knows.
And I also understand your frustration, discouragement and even your thoughts of envy. I have felt those same things on your behalf and in my own mind over the last years.
So my Lulu, this letter is for you to remind you of the things we have gained as a result of pain and suffering; your pain alone, and the pain I have had as your mommy as I have watched you take on your trails.....

If you were healthy, you may take the ways your body is strong for granted.
If you and I didn't spend so much alone time together, we wouldn't talk as much as we do.
If we weren't stuck in the hospital room as much as we are, we wouldn't have as many of our own silly jokes or secrets.
If we never had to wait (and wait and wait) for doctors or recovery, we wouldn't be practicing so much patience.
If you weren't sick, you wouldn't have helped put something back together without even knowing it was broken ( a story I will share with you when you are older).
If you weren't sick, I wouldn't be as strong as I am or as good of a mommy as I am to you and your brother and sister. You have given me that gift.
If you didn't have to fight through pain the way you do, you would not be nearly as compassionate towards others as you are.
If you weren't suffering, many of us may not be reminded of humility, endurance, grace and patience as often as we are because of what we see in you.
If you weren't sometimes too tired or sick to do things, you may take for granted the days you are strong and doing fun things.
If you weren't sick, there would be so many less prayers and less people talking to God.
If you weren't a little hero, we wouldn't have been as touched by the lives of your hero friends, and goodness, can you imagine life without having those friends?
If you didn't have to practice mind-over-matter or have to be brave so often you may not be as strong as you are now.
If I didn't watch you endure so much for so long, I wouldn't appreciate much of what I do, in the ways I do- soaking in the happiness you, Kate and Jack bring. Breathing in the yummy way you smell after a shower, just as I did when you were a newborn. Closing my eyes to take in all of your giggles and the sound of your voices singing. Committing the happiest days to memory knowing they will get us through the next trial and bring us smiles again.
If you didn't have to suffer my sweet girl, we may not recognize that life is hard, but it is also so wonderful in even small ways.

These are a lot of "ifs", I know. There are many other ifs or whys that we could list that have nothing to do with your suffering. Everyone has a list and is fine to question things and even be sad about some of them.
I want you to remember that even though life can feel so unfair and even as if God has forgotten to protect you or answer you at times, many of our "if's" have awesome answers and there is always something to be grateful for.
I love you Elizabeth Claire. If only you could grasp how much and how proud I am to be your mom.

Finally, an Update

It has been a long time since my last post. Though I have much to say, I will keep this blog entry to the point and factual as it is prayer for health that I would like most right now.
I last wrote when Liz was in-patient at CHLA for the colon manometry studies. We were a bit surprised when we learned that the tests revealed that her colon is not contracting much at all without the use of medication and enemas. We knew she had some issue going on, as her chronic impaction and other symptoms indicated, but her physician and Walter and I were surprised by the severity of her dysmotility. Unfortunately, the probes placed in the OR before the start of the day-long testing weren't able to be threaded to the right side of her colon or her cecum; frustrating at the time, but very disappointing now that we know how severe her dysmotility is. We need to know what her cecum and ascending colon is doing. The manometry studies will need to be repeated, perhaps in Cincinnati at the amazong colon/rectal/bowel center there.
After the results Liz was put on a new regimen of meds and enemas, but they are not working in the way we'd all hoped. Unfortunately there are no other medications available to try and at this point we can only adjust meds and enema schedules and try to make sense of her poor colon. Surgery is the only other option. We meet with her motility specialist in Los Angeles in two weeks to talk about whether or not it is time to head to Cincinnati to see the specialists there.
Due to the new findings, her Immunologist has also referred her to the genetics and mitochondrial specialist at CHLA for more studies.
She has had ongoing issues with her stoma (the site/opening where her g-tube is placed) and after much pain, treatment by her GI and home nursing, she finally has started seeing a wound care specialist. Two weeks ago her stoma cultured positive for a Staph infection. Of course this sent everyone into a bit of a frenzy as the topical cream antibiotic she'd already been using wasn't clearing the infection and using an oral antibiotic is not an easy recommendation for Liz due to the recurrent CDifficile. Her infectious disease doctor got involved and after many calls between us all, we elected to give an additional topical treatment a try. Last week, her stoma was swabbed again and is culturing less Staph than a few weeks ago, so we are hopeful the medicated creams are working enough on their own. Thursday she will have the stoma cultured for a third time and we are praying the Staph is continuing to decrease.

Liz has had some great days and has even had two weeks of attending school for the whole week! Admittedly, she is exhausted though and currently we are discussing with her doctors the option of pulling her from school for a couple of months during this flu season and in an effort to get better control of her colon (it is difficult to time enemas and hydration around a seven hour school day).
You may remember that we elected to stop the immunoglobulin infussions (IVIG) in May and watch her body to see what it would do on its own, without the help of donor blood to boost her immune system. We knew that the winter and flu season would be telling in how her body would do without that support. I've been praying that was the right choice.

Today I took her to the pediatrician because her cold-like symptoms are much worse and she has chest discomfort and a fever. Liz and I diagnosed her before we even saw the doctor, as we both know exactly what her sinus infections present like. She indeed does have a sinus infection and her chest pain and tight airways are due to possible bronchitis. Again, an oral antibiotic is not an easy go-to option for Elizabeth because of CDifficle. So, we are increasing her inhaled Azithromycin dosage and Dr L. is contacting Infectious Disease and GI before we begin an oral antibiotic. She is pretty uncomfortable tonight.
Today Dr. L and I talked again about pulling Liz from school and we have decided that we will have her labs drawn on January 4th to evaluate her white count and neutrophil count and then based on those labs decide when/if she can return to school. Infection requiring antibiotics is just such a scary thought for us because of the darn CDiff issue.
Speaking of CDiff, we are nearing a year of her being CDiff free! This is huge and such a praise as that last 9 month-long infection was such a blow to her body. Liz smiled today and told Dr. L and me that she needs a sign that reads "One year CDiff free and I didn't need my sister's poop!" (remember, a fecal transplant was on the table and in the works, with Kate being the donor) : )

Of course the last 2+ months since I've written have brought much more to blog, but tonight these are the facts.... these are the issues our girl needs prayers for.

If you are still thinking of her and praying, thank you.

Short update- Elizabeth is scheduled to go to the OR procedure room at 6:15ish this morning. After a cleanout at home Sunday- Monday, the team thought she needed an additional aggressive cleanout begining last night. She's had Golightly running all night and multiple enemas but hasn't had much result. I'm praying they don't reschedule her procedure due to this. Anesthesia should be straight forward as usual. Liz will be very uncomfortable and in pain throught the day as she wakes with the tubes in and endures the cramping during the 12 hour tests. Please pray for her. Thank you.

Please Pray

For my Elizabeth Claire-
http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related
(click and it will play in a separate window. you will be able to read blog during play)

My girl needs prayers this week. I covet prayer. I ask you mom to mom, friend to friend, please
flood His ears with your prayers. Elizabeth has gone through more than any person should ever have to endure. For years she has tolerated pain and suffering; for years she has kept on even though she has declined in may ways rather than healing. It feels as though she has no physical reward for all of her heroic ways she has endured in the hope that she would get well. How can one go on and continue to go through pain in the hopes that they will be made well?
I struggle with that thought every time I sign each consent form, every time I hand her over to the OR team and each time I allow her to be put through pain. It is a guilt no mother should have to feel and a trust no child should ever know.
Tomorrow Liz will begin another clean out at home in preparation for her hospital admission. Last weeks clean out was terrible with pain and retching. Also tomorrow, she will be seen by GI here in Long Beach because her gtube site has gotten even worse. She is now bleeding enough that she has blood coming out of the actual tube. I am a bit relieved that in the hospital this week we'll be able to have constant care and I am going to ask for the wound team to be in on helping her with the stoma.
On Tuesday she will be admitted to CHLA very early in the morning for more preparation and for IV fluids as she cannot take in anything other than clear liquids for the next few days. Wednesday she will go to the OR procedure room and have probes and catheters placed rectally and down through her nose/mouth. She'll be sedated during placement, but will wake with the tubes in and they will remain for a full day. On Thursday, she will have additional probes placed.This manometry testing is not fun. It will be painful and extremely uncomfortable as they make her colon contract over and over throughout the day for the study. Her GI team has held off on this testing for a year because it is awful and they wanted to spare her if at all possible.
Please pray for Elizabeth's tolerance. She will be in a hospital that is unfamiliar and she will be without the nurses we have come to trust and who care deeply for Liz personally. Also, other than the motility specialist who she has only met three times (and who lacks a great bedside manner), Liz will be without her team of doctors as CHLA is not our home hospital, and while we have met with specialists there before, she will not have her core team there.
Pray for Liz to not have unbearable pain and for nausea to be well managed. Pray that the doctors get the information they need and that the end result of this week of pain will be "worth" it.
Pray that her counts are stable- red and white cells, and platelets.
Pray for Jackson and Kate, too. I will not be able to see them because CHLA is not close to home. They both are already upset that I am leaving. Kate is sick with a horrible cold and I am praying that she is better by Tuesday and that Jackson stays healthy. It is awful to feel torn and want to be with my children when I cannot. Walter will be off of work for five days to help and will go back and forth from the hospital.


Thank you for praying. Ask others to pray. Know that I am grateful.

{Lord, I do not doubt you, but please, please help my Elizabeth and finally bring some healing. Please see how you have used her and touched lives through her, and please bring an end to her suffering}


The Lord has promised good to me
His word my hope secures.
He will my shield and portion be
as long as life endures.

A Bushel and a Peck....

 I grew up going to Oak Glen to enjoy a Fall day of apple picking. How fun to continue the tradition with my own family. On Saturday, my birthday, we headed up to the apples. Liz was supposed to begin a bowel clean out, but we held off a day because I had my mind set on a family day in the beautiful weather and nothing was going to stop us. We had the best day!

First stop was to pick pumpkins....

I love them a bushel and a peck.



 

Fitting because it IS true that Jackson has a big pumpkin head : )

Tractor ride up the hill.....

....and a beautiful view. Thank you God for eyes to see.

I would not let them start picking apples unless I was able to take their picture.

Going up.

Jackson was searching for yellow apples on the Red Delicious tree

I could not have been more happy on my birthday.

One of my most favorites ever of Kate.

Isn't she beautiful?

The tree(s) behind the girls was a set of twins. It was one tree that split in two.
Thanks for duplicating, silly girls!

Yay, a corn maze! Which way to go?

We decided to split up

I see you, mu Lulu

Choosing apples....

....for pressing. Let's make some cider, y'all!

We brought in our muscle girl when it got super tough



It is filling up.

They did it! Teamwork and some sibling arguing makes for great cider.

Kate caught this photo of Jack. After a long day, he was ready for home.

Until next year, Oak Glen.
I will remember this year, this image, especially.

Update

It has been a month since my last post and some have messaged me to ask how things are. It would take many words to fill in on everything that has happened, so I'll post pictures and recap.
We have been busy! Kate's volleyball and the kids' school schedule and homework would keep any family busy. Adding in Liz's appointments and many sleepless nights has made me exhausted and I just haven't had the time or motivation to blog.

Jackson and Kate are doing very well! Jack is making new friends at school and soaking in learning. He was pretty bored in the first weeks of school, but now that his class has been divided into reading groups based on the student's reading level, he is happy to be challenged more.
Kate is happy and my only worry for her is that she is too tired from having a lot on her plate. It is good for her to be busy though and for her to have her own "thing" to keep her distracted and motivated. Volleyball takes up two hours a night after school and middle school homework is intense, so she is falling into bed each night. She loves the sport and has committed to playing Club ball again, so we are hanging on for the ride of another season.

Elizabeth has been struggling. Her Gtube site (called a stoma) has not healed as well as it should. She's been dealing with pain and bleeding along with granulomas. Rather than having to go into the doctor's office each week, I now have been given the supplies to treat her granulomas at home. She's started back on Prilosec to help with the inflammation that is going on around the lining of her stomach and the balloon of the Gtube.
She had a reaction to the internal  stitches used and she has had horrible muscle pain. Normally, a tube is placed more mid-line... picture someone with a six-pack. There is a divot down the center of their torso where there is no muscle. This is where tubes are placed. Because of all of Liz's surgeries, her surgeon had to place her tube to the side, which meant he had to cut through muscle. Painful now, but slowly healing.

Last week she started retching more often, having pain, and she had two days of dizziness and feeling faint. A series of xrays of Wednesday confirmed that she was impacted with stool again, and that was contributing to her symptoms (impaction contributes to dehydration). She went through a clean out at home Sunday and Monday, which has been horrible. Usually she doesn't have as difficult a time as she's had this week and it has been awful to watch and help her through. Our goal is to keep her from having to be hospitalized this week. On top of the impaction and clean out, she is on day 10 of a nasty cold/viral thing and has felt pretty sick with cough, congestion and fatigue. We are praying it does not turn into a sinus infection which would be the worst thing that could happen for her right now.
Next Monday, she will begin another clean out at home and then on Tuesday, we'll head to CHLA for her to be admitted for the week for manometry studies.
She could definitely use prayer.

This is a move Jackson calls the "X-ray" : )

Kate had a visit to the doctor for a physical. She grew nine and three-quarter inches in
just two years! She is strong, healthy and going to be TALL!

Tired eyes but big smiles for us both.

Liz's surgeon. When you pray for her during her surgeries, this is the man you
are holding in prayer as he holds her life in his hands.

Liz has missed the last eight days of school : ( Here she is on a healthy day giving herself
meds through her tube while she does homework.

This touched Liz and she shared it with me.
How amazing is she?