A Mother's Journey: 2013

Tuesday, December 31, 2013

SIX YEARS already!?! A trip down memory lane...

Take a trip down memory lane with me as I remember the day we began a crazy, terrifying, unfamiliar, heart-wrenching journey.

On the evening of December 31, 2007, we were preparing our two daughters, Abby and Emma for a fun night at our church's New Year's Eve Party...little did we know, we would NEVER make it.

Our little Emma was only 18 months old...she had an "explosion" in her diaper, which required a bath...so like any mom, frustrated...I complained all the way to the bathroom, cleaned her up with wipes and put her in the bath. While playing with toys in the bath, she had another bowel movement...soooo I grabbed her out of the bath, yelled for Matthew, rinsed her off again...and headed to her room...Matthew was the lucky one that got to stay and clean up Emma's mess. Hahaha.

After laying her on her changing table and putting lotion on her, I lifted her legs to put her diaper on...and there it was...what was it!?! I had no clue...but something was hanging out of her bottom...again I yelled for Matthew. Both of us were stunned and afraid. After calling Matt's sister, who rushed over to look, we rushed her to urgent care. They were waiting for us and quickly took her back...they looked at her bottom, told us she had a "rectal prolapse" and rushed us off for a 45 minutes drive to a Bakersfield hospital. They didn't even want us to wait for an ambulance to get to Taft! Urgent Care called the hospital and highway patrol to inform them of our mission to get to the hospital as fast but as Safely as possible.

So, fearfully, we made the drive while I sat in the back seat holding my little girl on my lap (since she couldn't sit on her bottom), my mind filled with fear! For 18 months I had been complaining to Emma's pediatrician that something was wrong with my daughter. Emma was ALWAYS sick. She only weighed 14 pounds on her first birthday, she couldn't sit on her own, she could barely crawl, she couldn't walk, she would projectile vomit 8-10 times a day and would have 15-20 poopy diapers a day!! It was exhausting! But everything in me KNEW something was wrong.

After making it to the hospital, we ran in and straight back to a room. I'm mean we honestly didn't even sit in the waiting room...it was nuts, but made me even more concerned at the urgency everyone was giving us.

The doctors went through her medical history and "reduced" (pushed back in) the prolapse. Relief!!! But was it!?!....

Within 10 minutes, she had another bowel movement and it was out even further this time. Another doctor came in and again we reviewed Emma's history. The doctor ask me if Emma had cystic fibrosis. Not knowing anything about CF I quickly dismissed it. When Matthew returned from calling our family, I mentioned the doctor asking about cystic fibrosis. He became very concerned. He had lost a friend to the disease in high school. The doctors decided Emma needed to see specialist and would most likely have to have surgery to stitch her rectum back where it belonged.

4 hours later, I loaded my scared little girl into the back of an ambulance and brought the new year in riding in the back with two paramedics on the bumpy, long, fog-filled drive to Children's Hospital Central California.

As soon as we arrived, we were greeted by a sweet, red headed nurse. Upon looking Emma over, she said very plainly and matter of fact..."Now your daughter has Cystic Fibrosis correct?" At this point I was functioning on no sleep for over 24 hours...I looked at her like she was crazy...I was terrified by what was happening...my heart and mind filled with even more terror. As calming as I could I replied "NO! Why does everyone keep saying that!!" She looked at me with sympathetic eyes and with such gentleness said "Oh honey, I hate to say this, but just by looking at your little girl, I'm 99% positive she has CF." She quietly left the room. I sat there with my sleeping daughter stunned, alone, afraid and began to cry.

Matthew arrived later as we were in the midst of tons of blood tests and taping her bottom closed so that she couldn't have another prolapse.

Since it was now January 1, 2008, everything was closed! I had been up for nearly 40 hours and was fading fast. So we spent the new year away from our daughter Abby, sitting in a cold, small hospital room, two and a half hours away from home. I remember thinking to myself...this is a horrible way to start the new year!!

The morning of January 2, 2008, is still a blur...everyone and I mean everyone was in "go" mode!! I felt like Emma's hospital room had a revolving door...doctor after doctor...nurse after nurse...Phlebotomist after Phlebotomist...from examines, to blood test, to X-rays, to more examines, to more blood test, and examines again...to the ever important sweat chloride test...it was exhausting!!

That afternoon, a tall, skinny, brown haired Indian man wearing slacks, a dress skirt and a tie with a stethoscope around his neck entered Emma's room holding a very thick book. Dr. Suddahaker, came in, listened to Emma breath for a long time and then asked us if he could sit down. As he sat, I knew something was about to happen. Exhausted, fearful, weary and nervous. We listened to this sweet man, explain that Emma's sweat chloride levels are extremely high, which indicates that she does in fact have a terminal disease. He began to explain Cystic Fibrosis to Matthew and I. Both of us filled with tears...he gave us our new book about navigating through this new life we were about to enter. He explained Emma would begin breathing treatments, chest physiotherapy, and several medications. Matthew and I were a mess!!

After he left, we sat in silence. I was having trouble breathing...the walls felt like they were closing in on me. I HAD to get out of that room!! I got up and went for a walk. I had to pull myself together. I found myself in the "serenity garden". I sat there and began literally crying out to God...I was yelling at Him..."WHY LORD WHY!!???" "WHY ARE YOU PUNISHING ME!!??" "WHY DID YOU GIVE ME A DAUGHTER THAT WILL DIE??!!" "WHAT DID I DO THAT IS SO BAD TO DESERVE THIS??!!" After I had yelled and cried until I couldn't anymore, I sat down. I began to feel a warm feeling come over me...the best way to describe it is that feeling of being freezing cold and wrapping yourself in a warm blanket and finally beginning to relax. I felt like God was telling me...

"Lisa, I'm not angry with you, I'm not punishing you, but I TRUST you. You are the BEST mom for Emma!"

I immediately felt peace. I sat there a little longer and I started to feel honored...I surely didn't know anything about cystic fibrosis, but the God of the universe pick me!!! He believes I am the BEST mom for Emma!! He TRUST ME!!! Wait, let me say that again...GOD TRUST ME!!!! Wow!! What a compliment!!

You see friends, so many times we look at bad things as a punishment, true sometimes it is...but God is a just God! Sometimes our trials are because God trust us! He knows that you can handle it with his strength!! He knows that as you lean on Him, he will carry you through your darkest hours!!

My fear slowly turned into strength. For the next six days I learned about CF, all the medications, and what our future would hold. I would be lying if I said it was easy...it was hard, and nerve-racking, it still is!!! But I knew in my heart of hearts, that I COULD DO THIS!!

The last six years have been filled with many ups and downs. In 2008 alone Emma was hospitized 5 times and had several surgeries. We also welcomed our third daughter, Ayva Lee.

We took each step carefully and had to learn the value of each breath and each day that we are given.

In the last six years Emma has been hospitalized 13 times, she has had more surgeries than I can count. has fought numerous lung bacterias, has been home schooled, has spent many holidays in the hospital (she even turned 7 at CHCC), has been on home IV medication and so much more...but she has also learned to walk, go potty in the toilet, to color, the excitement of the first day of school, To wake up on Christmas morning and enjoy the magic, lessons about Jesus, faith, trust, and love. She has been able to bake cookies, loose teeth, ride a bike, play with dolls, draw, read a book, fight with her sisters, paint, to just be a "normal" kid!!!

Emma Ann Ritter has Cystic Fibrosis...Cystic Fibrosis DOES NOT have her!!! She has proven to be the strongest little girl I know! She continues to remind me of God's faithfulness, His promises, His love and His Grace!!!

Emma has taught me that we can overcome anything, nothing can keep a strong girl down, that God cares about the "little" things and that He has a plan...even if it's at the hospital!!

As we enter into 2014...think back on this past year...What has God shown you?...What has He taught you?...How can the lessons you learned lead and inspire you in 2014?

If you could sum up 2013 in ONE word...What would it be!?! For me...it would be...BLESSED!!!

Happy New Year from our family to yours!! May we all feel God's love, strength and grace...may we walk in His footsteps and rejoice in His TRUST!!

Wednesday, December 4, 2013

RUNNING with Endurance - A Year Review

It has been awhile since I took the time to blog...life moves WAY to fast..!!!

I find myself trying to be a good mom, wife, friend...but I fail...and darn it...I fail daily...!! More times then not, I feel short tempered, impatient, exhausted, defeated...then God in His power and grace remind me of Hebrews 12:1...

"Let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us."

Those feeling of being short tempted, impatient and defeated are a waste of my time and energy. But I still struggle with them at times. I share these raw feelings with you, because at this very moment, I am trying to run with endurance the race God has set in front of me....

Today...Emma is home from school...and has been for nearly two week...she's been on independent study I should say..! Winter is hard on her little body. At her last doctors appointment her lung functions and her weight dropped. After close to three weeks on more antibiotics she's still not 100%...so for her safety, we have chosen to keep her home.

With all that being said...she climbed up on my lap this morning to let me know that she felt "perfectly fine" and wanted to go back to school. What does "perfectly fine" look like to a 7-year-old fighting Cystic Fibrosis:

1. Her body is extra tired, so she has been sleeping in

2. She is coughing a lot due to extra mucus

3. She can't take in a BIG deep breath without wheezing or coughing

4. She's doing extra albuterol to help her breathe easier

5. Her energy level has decreased

But she's "perfectly fine"!!! Lol. Then I realized, in her mind, she is..!! This is how she feels most of the time! Breathing with Cystic Fibrosis has been compared to plugging your nose and breathing through a straw. I feel like a whimp, because just plugging my nose and trying to breathe is exhausting! Lol.

But we keep running with endurance!!

I was recently going through the past year of pictures and experiences...and thought I would share a few things that God has done in the last 365 days as we RUN with endurance...

Last Christmas some amazing person or people, surprised us and Emma with the ONE thing she wanted for Christmas that we couldn't get her...a Barbie Jeep!! She still drives it all over the neighborhood, and it has brough her and her sisters countless hours of fun!!! It still brings tears to my eyes when I think of how kind people are!!!!

We found this in her room...Emma is learning and accepting more and more things about cystic fibrosis aka 65 Roses. She has become very sensitive to other who are sick.

In March of this year we participated in the CF Walk...Emma's Army had over 150 walkers and raised close to $6000.00 for research!! Emma's great grandma, Lois, even joined the fun!!

In an attempted to show you a day in the life of...I took these photos of Emma...the top one with everything she needs to be a kids...all her favorite toys, crafts, things she LOVES!! The bottom picture is everything she NEEDS to sustain life, medicine, treatments, feeding tube supplies, equiptment.

Emma spent her 7th birthday in the hospital...all she ask for was 100 birthday cards to decorate her hospital room with..!!! Well...her wish came true...

Thanks to social media, Emma's story made national news (honestly, just google "Emma Ritter cystic fibrosis"). Her story was on the huffington post, today show, CNN News, AOL news, reddit, and several local news stations!!! Emma received over 10,000 birthday cards from EVERY state in the United States!! From record labels, the House of Representives, Senators, recording artists, motorcycle clubs, police, sheriffs, Target, the FBI, and cards from ALL OVER THE WORLD!! Poland, Hong Kong, Iceland, Austrialia, England, Paris, France, and many more!! She even received a card from the King of the Netherlands!! As a mom this was the most amazing, unbelievable, in fathomable, surreal experience EVER!! I cried more tears then I can explain. To see so much love and kindness from all over the world touched my heart in an amazing way!! Honestly, I need to blog on just her birthday card experience!!

What a year it's been..!!! Being a parent of a child with a terminal illness is hard! It has it's challenges...but as we run the race God has in front of us with endurance...He gives us everything we need to make it through each day! It may be a hug, prayer, word of encouragement, or financial blessing...we have watched God meet our needs over and over again!! And we are so thankful to serve such a HUGE God that cares about his children..!!!!

We wish you and your family a blessed holiday season...and remember to RUN WITH ENDURANCE the race His has put in front of you...!!!!

Tuesday, September 3, 2013

50 Shades of Insanity

Ok, some of you may think I'm crazy. Some may think I'm a prude. Still others may think I'm ignorant, judmental, arrogant or hypocritical. But...It's time I take a stand for what I believe in....

**DISCLAIMER** I have to speak out about the 50 Shades of Grey book...so if you like this book and all it stands for...Then please STOP reading now and have a great day!! If you are bothered by the rants and raves following this book...then by all means...keep reading!!

Many of my CHRISTIAN friends and family have read 50 Shades of Grey. Before knowing much about the books, I regret to admit I began reading it...five chapters in, I stopped and never touched it again...even returned it and got my money back. This is written to my friends, who want to LIVE for Christ and what His world tells us!

Ladies...especially my married friends...I find it interesting that women, get so frustrated and feel so degraded with men for looking at porn (playboy, penthouse, hustler, etc) yet justify their lust for Christian Grey as "a good book"??? And now the detailed posts I've read lately about Charlie Hunnam being casts to play the character. I am startled by the desires many Christian ladies so freely share regarding 50 Shades of Grey.

Many times we wonder why our husbands, brothers, sons, nephews and fathers struggle with keeping pure thoughts in a world filled with sex. Why marriages are failing over sex addictions, and affairs. Yet women all over the world are dreaming and sharing their desires of just one night of hot steamy, passionate, sex with a fictitious character!!

I have sat with many women coping from the loss of a marriage due to pornography, infidelity, and sexual addictions. I have counseled women who have stated the issues in their marriage came from the worlds ideas of what was sexy. I have listen to the heartfelt tears of ladies that are broken emotionally from the loss of their husband to another women. I have encouraged women who's self esteem was shattered over their spouse wanting them to look like some lady they saw in a magazine, movie or porn.

My friends, it's time to open our eyes!!

I find it offensive for Christian women to post about how wonderful, hot, and sexy Charlie Hunnam is and how awesome it is that he is cast as the sexy, heartthrob Christian Grey with pictures included of his greased up topless body! Sisters, how would you feel, if your man of God was posting statuses and pictures of a nearly topless Megan Fox saying how sexy she was and how they wish the could have a night of crazy, passionate sex with her? I imagine that most of you would be hurt or even feel like you could never measure up to the gorgeous Megan Fox.

It all boils down to RESPECT! When you decided to marry the man of your "dreams", you vowed to love, honor and cherish your him...to forsake all others...to love him through better and worse...and he vowed the same to you. This means even the visions, desires, and lust for a character from a book...Christian Grey or the actor playing him in a movie...Charlie Hunnam!!

1 John 2:16

"For everything in the world—the lust of the flesh, the lust of the eyes, and the pride of life—comes not from the Father but from the world."

Ladies...together, lets take a stand for our relationships with Christ, our husband, our self!! Let's refuse to fall victim to another lie of the world...

May we make decisions based off of the one who made us, who loves us and who calls us His priceless treasure!!

Let's respect ourselves and our husband or loved ones and remember the vows you made to Him...as God IS our witness!!

I apologize if this has offended you, it is not my desire to cast judgement upon you. My heart and passion is to see us become the Women, Wives, Mothers, Dauhters, Aunts, Nieces, Grandmothers, Sisters, and friends that God has called us to be! From the bottom of my heart, I love you my friends!!

Friday, April 19, 2013

Terminal Illness + Medication = Joy

I am currently teaching a weekly Bible study called "Singing in the Rain"-Finding JOY in life's ups and downs. I know...very appropriate for my life. Lol

This week, we watched the clip of Gene Kelley dancing and singing in the rain. In the clip, there are people trying to rush by and get out of the rain, while Gene enjoys the rain. We were asked, who are we most like when hard times hit us? Are we like the people running to get away from it or like Gene and find joy in the rain. Whom do you see yourself like?

We have a young lady in my group, that recently (in December) lost her 13 year old son to brain cancer. This devastating loss is so very apparent on her face and in her eyes. My heart breaks for her loss.

She shared something in our group, that hit me like a ton of bricks. I think I can actually explain it now without crying.

She explained how her daily routine consisted of caring for her son. Which obviously included doctors, insurance, and lots of medications. She said, after he passed away, she opened the cabinet where they kept the medicine and it was empty, and now she doesn't know what to do with her time. When she said this, I found myself having a hard time catching my breath. Emma has a huge cabinet FULL of medicine! I suddenly had a vision of it being empty.

By the grace of God, another lady in my group started talking to her to encourage her. I was silent. My mind was reeling out of control. Cystic Fibrosis is a terminal illness. Emma can't survive long without her daily medications and treatments. The thought of it all being gone, no medication, no doctors to visit, no insurance to fight with, no labs to do, no stool to collect (I know, gross), no hospital stays...it was so hard for me to imagine!! Even now I am sitting in a doctors appointment for Emma while writing this!!

Later that day, my heart was still grieving this horrible thought. I received a call saying Emma's Medications were ready for pick up from our pharmacy (the lady that handles all Emma's meds, Suzanne, is AMAZING). I have to be honest, I've NEVER found more JOY then that trip to the pharmacy! As I walked out with Emma's medications in hand, I thought, today more than ever, I am like Gene Kelley!! Although my daughter is on more medications than most people, I will sing in the rain and be grateful that I live in a country that provides ways to prolong my child's life!!!

So as the title says:
Terminal Illness + Medications = Joy

From one mom to another: I hope you have a Singing in the Rain kind of day!!

Xoxox
Lisa

Tuesday, April 16, 2013

Have You Hugged Your Child Today?

More often than not, I feel like I've failed my girls in one way or another. Yet...somehow, they are always filled with grace and kindness. Maybe it's because they are young, or maybe...and most likely...it's because God allows them to show me His love everyday!!

I just wanted to remind each of you today, that even though we make mistakes as moms daily...our kids love us!! Take a moment to go and hug your child today and tell them you love them. Let them know that they are your sunshine, your only sunshine! They make you happy when skies are grey!! Look into their eyes, smell their hair, kiss their little ears and listen to their giggles. Despite how they might frustrate us, aside from our salvation, they are Gods most precious gift here on earth!!

Tuesday, March 5, 2013

Taking the Mask Off

"Crisis has happened. What will come of this? ... We have a choice to be conformed to the ordinary, the expected, the easier path. Or we can choose to let this event transform us."
---Miriam Neff

There are days when I feel as if a nuclear bomb just hit our family, and other days I feel as relaxed as can be (those days are few and far between, and normally forced on me thanks to my loving husband). The fact is our family endures a crisis every day. We have learned to live with it, and endure it, and one day we pray we can conquer it.

Living with a child with Cystic Fibrosis is challenging. Just like in all things, I have my good days and I have my bad. I tend to wear my happy mommy mask on those bad days, knowing they will pass, but also not wanting to make anyone feel sorry for me, nor our family, because we KNOW that God is in control and that He knows that we can handle whatever comes our way. But I have realized something recently...wearing a happy mommy mask stinks! I want to be real with you and I want you to know how hard some days can be. I am going to take my mask off today and be real with you...

For starters...No, I don't own a super hero cape. No, I don't own a super hero costume...and No, I don't have any super powers (although the abilities to twitch my nose and have a clean house would be AMAZING). I am a MOM! I supposed that is the greatest superhero of all times, but I am normal...well, some may disagree...but for sake of argument, I am a "normal" mom. I laugh, I cry, I get angry, and scared. I feel empowered and encouraged. I feel weakness and failures. As a mom of three amazing little ladies, I feel blessed, loved, needed and wanted. As a mom of a CFer, I feel tired, overwhelmed, frightened and discouraged.

Lately, I have been struggling with looking at our CF journey with an encouraged heart. Emma's health has been deteriorating and it is so hard for me. With every treatment, medication, and doctors appointment, I feel more concern. In the last year, Emma's PFT's (lung functions) have dropped a total of 88%!!!! For some of you reading this, you have no clue what I'm talking about. At every doctor's appointment, we check to see how well Emma's lungs are working, in the past 12 months, she has had a steady decrease in how well they are doing. Now, let me be clear with one thing, Emma's lung functions are still good! They just used to be AMAZING! They believe it may be caused from the new bacteria in her lungs. We are meeting with Infectious Disease later this week, in hopes that we get some answers.

As a mom of a child with a terminal illness, you struggle with many things, but I feel the need to address one, specifically. **Disclaimer...I'm about to get VERY personal*** Knowing that this horrible illness will take the life of my daughter is so hard to wrap my head around. I have recently watched several families have to bury their babies, teens and young adults due to Cystic Fibrosis. In the USA, one person dies from CF daily! Cystic Fibrosis is not a respecter or persons, age, ethnicity, religion, education or gender. CF is deadly and unfortunately, it wins every time. I don't say that to sound heartless, it's the facts, the truth, the reality of our life.

They say roses are meant for love
And roses are meant for peace
But these roses shed blood
These roses are quite unique

Instead of the typical dozen
We are dealt with 65
We must learn how to function
We must learn how to survive

As our bodies grow weaker
Our minds become stronger
As our roses become the leader
Our days aren’t stretched much longer

Thorns leave behind defections
These soon become our heroic alterations
Our roses aren’t signs of affection
We must learn to accept our gene mutations

We are much more than sisters and brothers
We are cysters and fibros
Once there is a passing of another
The sorrow overflows

Although someone may have passed
It doesn’t mean they have succumbed to the fight
Although that crackly breath was their last
Their strength and soul still ignites

In spite of the fact that roses have deadly thorns
There’s a beauty within them all
Between tears, pain and all of the mourning
We have learned to accept this brawl

Author Unknown

Now, onto the area I am struggling...I am having the hardest time with wanting to make good memories with my girls, especially with Emma. I know some of you think I am insane right now...but the reality is, as Emma's health is starting to fade, I fear making these amazing memories with her and then having to watch her fade away. True, I will have these great memories, but in light of the thought of losing my daughter, those memories will NEVER be enough!! I will only long for more, I will long to hold her her, laugh with her, tickle her, hear her silly jokes, look at her beautiful drawings, see her amazing smile. It will be torture. I sing a song to Emma all the time...

You are my Sunshine, my only Sunshine.
You make me happy when sky's are grey
You'll never know dear how much I love you
Please don't take my Sunshine away

Unless a cure is found, I know one day my Sunshine will be taken away. I hate that thought, it has brought a fear in my heart. I am so terrified of this day. I'm not sure if I am the only CF Mom that feels this way, but I highly doubt it. Now, with all that being said...will I let this crisis dictate the memories I make with my girls??? NO!!!! I long to treasure each moment with them. To look into their precious eyes and know that without saying a single word, they know that they are special and loved. I am a control freak, I want to control the future, but I know I have no control over it...God knows the who, what, when, where, and why of everything...so I tend to stress myself out for nothing!

For those of you that have children, remember to stop and hug them a little tighter today. Stop and listen to their laugh, their sweet little voice. Watch them with amazement today as the play, grow and enjoy life. You never know what tomorrow holds...what are the BEST qualities of your little angel?

Abby has the most giving, loving and helpful heart. She longs to make you proud. She is hilarious and has an amazing sense of humor. Emma has smile that warms your heart, a laugh that brightens your world and a personality that makes you fall in love with her. She is the most sensitive to those that are hurt or ill. Ayva is the most determined little girl. She has the softest heart, she loves to be with her family and she loves to be silly. I'd love to hear about your little ones...no matter how old your "baby" might be...tell me about them...

"Love and Pain go together, for a time at least. If you would know love, you must know pain too." Hannah Hurnard

The fact of the matter is, love hurts. It always has and it always will...but despite my fears, and insecurities, I cling to God's word and know that 'He is close to those who are brokenhearted and He rescues those who are crushed in spirit.' Psalm 34:18. My God is holding me in my time of need and He wipes away every tear that I cry. Remember, that He loves you, He sent His ONLY Son for you!

I hope and pray that you are encouraged...even in the midst of pain and sorrow. Of confusion, frustration, joys and excitement. We all wear a "mask" at times, hopefully, we can all learn to take them off and be real with one another. Thank you for letting me take my mask off today!

Sunday, March 3, 2013

A Mother's Journey-May 30, 2012

A Mother's Journey-Day 9

by Lisa Miller-Ormonde Ritter on Wednesday, May 30, 2012 at 8:24pm ·

God grant me the strength to handle life's challenges, In order to overcome these life long obstacles.
God grant me the courage to stand up for what I believe in, In order to express my true opinions without fear.
God grant me the answers to my questions, In order to find some understanding.
God grant me the piece of mind I so desperately need, In order to remain sane in this inside universe.
God grant me the patience I thought I once had, In order to with stand everything thrown to me.
God grant me the guidance to be able to succeed, In order to be whatever it is I want to be. God I need you now and forever, please help me .

The poem/prayer above was sent to me from a friend and fellow CF Mommy! It really meant a lot to me, so I had to share it with you guys! Today was better then yesterday!
Today, Emma's doctor informed me that her echocardiogram came back normal!!! PRAISE GOD!!! The final word is...Emma turning blue around her mouth is NORMAL!?!?!?! hahahaha Even though it isn't normal to turn blue around your mouth, for Emma, it is part of her vascular make-up. As far as her lungs, she started a new medication to help loosen the mucus. We will re-x-ray her lungs on Thursday to see if it is making any difference. If there is no change, then her doctor will scope her lungs to try to break the mucus plug free. She will be having surgery on Friday to replace her mediport. The reason this is being done is Emma has had her port for four years on July 2, since it has been in for so long there is the concern that her body may have formed around the catheter. If this happens, it can get cause it to get stuck and lead to a more invasive surgery, which we don't want. Emma's doctor said, since her surgeon is able to fit her in this week, then we should be able to go home by Monday!! YAY!!!!!!!!!!!!!!!!!!
Today Emma went "camping"!! The Paul Newman Foundation came and set up a "camp site". They had a camp fire, made of lights, the did arts and crafts, the played games and sang songs. Emma had so much fun. She also played some basketball with her nurse, "Canole", which was adorable to watch!!!
I will be so happy to get home, but I have to be honest...I will be sad to not see some of the amazing staff around her. I can't brag enough about how amazing they are. It is so comforting to be around people that not only take care of my daughter but love, and truly care about her!! The staff has become family and I can't thank God enough for giving us a place to feel so at home. With that being said...I will miss them...but I will be SOOOOO HAPPY TO SEE MY FAMILY!!!! ONLY 5 more sleeps!!!!!!!!!!!! :)

A Mother's Journey-"Trust Me"-March 29, 2012

A Mother's Journey-"Trust Me"

by Lisa Miller-Ormonde Ritter on Thursday, March 29, 2012 at 11:35am ·

"I will never leave you nor forsake you." Heb. 13:5
On hard days like today, I can find myself wanting to throw myself a pity party! Yesterday, I fought with CCS (California Children's Services) because they are trying to deny Emma all of her feeding tube supplies. Their reason...because she has reached the 10-25% for her height/weight! What they fail to understand is that the feeding supplies are the ONLY reason she is growing!!!! Plus if you just look at her weight...she is only in the 3-5%!! So...after calling all her doctors, children's home care and healthnet...I have to just wait for people to do their "job" and try to work it out...UGH!!!
Today, Emma woke up sick. She is coughing a ton, very grumpy and to top it off, she has a fever. It's ONE day from spring break!! The timing just couldn't be any better! :( Then I went to flush her mediport...and low and behold...it WON'T FLUSH!!! Something is wrong with it and it's not working...this is how Emma gets all her IV meds, so without the port, she has to do regualr IV's, which on a CF patient are pointless. So, if we can't get it to work...then we will have to do yet another surgery to replace it!!
In my devotional this morning it said "Before your burden overcomes you, trust God to put His arms underneath you." Underneath me...I had to look this up...dig a little deeper...God want to hold me up durning my times of burden. I looked up "To hold up" in my dictionary and to my shock it says "to continue to live through hardship or adversity". What a picture...God will hold be up during my darkest hours, my times of pressure and burden and through that I can continue to live through the hardship and adversity with God holding me!! My devotion also said "We can trust our faithful God to be there in all your stuggles. 'When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.' Isa. 43:2"
The hospital just called and they are going to wait to see how Emma is doing tomorrow...if she isn't feeling better than we will have to look at the possiblitly of admitting her during spring break! :( As far as her port...they are calling in a nurse to come look at it and put some medicine in it to try and break up whatever is blocking it!!
Today, as we each face our hardships, our trials, our persecutions, our struggles, we need to remember that "Before your burden overcomes you, trust God to put His arms underneath you"!!
I don't know about you...but it sure enourages me to put a stop to the pity party I was thinking about having! haha Have a great day my friends!!
Love,
Lisa

Mother's Journey-August 24, 2009

August 24, 2009

Emma was admitted to Children’s Hospital Los Angeles (CHLA) on Saturday, August 22…they have been pumping her full of antibiotics and her cough has started to sound a little better. Emma has been having a hard time this stay; I am not sure if it is because it has been 9 months since her last stay or if it is because we are at a new hospital. She has made it very clear that she misses her daddy! Whatever the case, it has been rough.

Upon arriving it was apparent we had been SPOILED at Children’s Hospital Central California (CHCC) (Madera/Fresno)…our room at CHLA is tiny, about half the size of the rooms at CHCC…it contains a two and a half foot chair that pulls out into a bed for me to sleep on, it’s hard and completely impossible to get a “good” night sleep on. Our room, does have a toilet, but no shower or bath! So, to shower I must use one of the two “public” showers assigned to our wing. It’s sort of like going camping and having to hike to the bathroom and shower and hope no one else has had the same idea as you. We have to pay to park here, you can buy a weekly parking pass that will give you in and out privileges but you can’t buy it on the weekend…so I didn’t want to leave and have to pay again. We also have an intercom system in our room that pages the hospital staff at all hours, which to our excitement doesn’t have a volume control. On the plus side, the have a McDonalds that serves iced coffee!

Yesterday, Emma’s nurse Shonda, a tall blonde hair blue eyes middle aged lady with lips that would put Angelina Jolie to shame, helped make Emma happy with coloring pages of Spongebob and Hello Kitty. She also directed me to the closest Target…a 25 FRUSTRATING minute drive, where I found some much needed socks and a cute doctor’s play kit for Emma…I’ll come back to this in a minute.

Last night was LONG…someone was in our room every other hour for one thing or another; we even heard “OOOPPS, wrong room!” I was ever so thankful for the wake up calls. I also learned that the “Just say NO” phrase was written about the fantastic pullout chair they gave me to sleep in, so I crawled into the twin size hospital bed with Emma. I can honestly say; I am not sure which one was worse!

This morning, Emma had an ultrasound of her liver, we await the results. We are also waiting for the results of the MRSA test. Her drug levels were a little bit high so they have adjusted that and we will have to retest her later.

Today, we had four doctors in here at the same time, one pediatrician, two pulmonary doctors and one student doctor. Emma took this chance to use her doctor kit I got her. She walked over and grabbed the case, she took out the shot and walked to the main pulmonary doctor and said very clearly “ Hey, What’s the big idea, come here and get your shot!” We all burst into laughter and she then said, “It’s not funny, it give you an owie!” Again, we were all laughing; she started laughing at us and went to give her stuffed animal a shot instead. It’s moments like this that make me laugh be also break my heart, Emma has gone through so much. She truly understands the pain of a shot in ways that I can never understand. She has had more test and seen more doctors in her three years then I have in my 31 years. She has a shirt on today that says “ONE TOUGH COOKIE,” it couldn’t suit her any better. She is so tough, so strong and so patient. I am always amazed at how resilient children can be.

As you know, Ayva has joined us on this trip…what an experience it has been. The nurses are all crazy about her and we haven’t had any problems with her staying with us, but I think she has had a problem staying with us. She hates it here. She has been crying most of the time and only wants me to hold her. She doesn’t really want to play and she will crawl around but tries to escape when the door is open…she wants outta here…I can’t blame her.

Today, we have had the pleasure of listening to the hospital test the fire alarms since 6 am. Yep, it’s wonderful…every 5 minutes; these extraordinary devices would chime, like a child banging on a xylophone. It was especially gratifying during naptime!

Tonight, I have an old friend coming to bring me dinner. I am especially excited to see her, since it has been about 15 years. I hope they stop testing the fire alarm by then; it may drive her as crazy as it is me.

Thank you all for letting me vent and for your constant thoughts and prayers. We love you all…I’ll update you more soon!!

Love,
Lisa ( plus Emma and Ayva)