Wednesday, July 17, 2013

“It's not the size of the dog in the fight, it's the size of the fight in the dog.”
― Mark Twain

Our Tiny Princess has been through a lot these past couple of months.  Her g-tube placement surgery was a success, and we only had to spend 4 days at the hospital!  We are very happy that we did the surgery at TCH because it allowed us to see how the hospital works up there.  I never would have guessed that things would be done so much differently, but I'm glad we were able to see things through the eyes of parents that did not have a child there because of a life threatening situation.  We also learned that Our Tiny Princess does not have EoE, or Celiac disease.  The information was a little frustrating at first, but with some new therapies, Ella is now working on eating more types of foods which would not have happened if we had not learned of her misdiagnosis.

Ella was doing pretty good until about a month after Ella's g-tube placement she started to get sick.  Even with the constant ER visits, and phone calls to the numerous doctors, she ended up having another hypoglycemia episode.  Her sugars were below 10, and they were having a really hard time bringing them up.  Thankfully she did not experience seizure activity with this episode like she did last time, but it was still a very scary situation.  She ended up staying for about a week and a half while the doctors were trying to find out why they could not keep her sugar levels normal.  Ella will be seeing another doctor to run some more tests, and hopefully come up with some answers for the hypoglycemia next Month.

Our Tiny Princess was also seen by TCH again for our cardiac follow up.  Dr. Jeewa had the chance to visit with us this time, and could not believe how much she has grown and developed!  Her heart function is still sitting at the same numbers we have seen for about 2 years now, and he was very impressed.  They were not very impressed by her weight loss, but we have been in contact with a dietitian, hoping to have some more success with her weight gain.

As the months go on, Our Tiny Princess proves that she is a fighter with her disease.  As far as this little princess knows, she is your typical 2 year old.  She fights with her sister, and friends, knowingly gets into trouble, and never lets her size be an issue.

Wednesday, April 24, 2013

“People who consider themselves victims of their circumstances will always remain victims unless they develop a greater vision for their lives.”
~Stedman Graham~
Oh my goodness where to start! Life has been full of surprises, and it reminds me everyday how much the Lord is watching over us.  We have met a wonderful family that has a little boy with some of the same heart problems as Ella.  What breaks my heart is that he is not doing as well, and the family keeps hearing heartbreaking news at every turn.  The thing that I love most about this family is that like us, they take this information, and turn it into something positive.  Now don't get me wrong, everyone has their bad days, but they trust in God to lead them to the path they were meant to follow.  Watching and listening to them makes me understand how important it is to keep your head up because there is always another way.  It may not be the way you want or planned, but keep an open heart and things will work themselves out!
In the past 3 months things have been so amazing for our little Warrior Princess.  We attended a Heart Walk in Austin to raise money an awareness for Congenital Heart Defects.  They raised so much money for it only being their first few years, and I cannot wait to keep helping!  
The Warrior Princess met with a new Cardiologist in Houston that we had never seen before, and I could tell the minute he walked in, he was amazed.  He sat there for a minute and watched as Ella was walking (yes walking) all over the room, playing with the nurses and with us.  He again told us about how bad her heart is, it doesn't pump like a normal heart, it just kind of makes a slight twisting motion.  I understood because after looking at her last Echo I could finally see what it is that they are so amazed about.  I guess like anything, if you are introduced to it enough, eventually start to learn how to do it.  We also needed to increase her medication slightly because of, wait for it, her weight gain!!!!  I could not be a happier mom hearing those words.  She is still on a very low dose of everything, and confusing every new doctor she sees. 
Our Tiny Princess also met with the EoE clinic in Houston to be assessed for her condition.  Come to find out from them, she may have been misdiagnosed.  We have finally been allowed to introduce some food into her diet, and this little girl could not be happier! She is eating everything she can get her hands on! We still have foods we need to avoid, she does still take formula, and we still use medication as if she was on EoE, but when she has her feeding tube placed on May 17th, they will take another look at her to see if she really has EoE.  I now have a new found respect for anyone on a gluten free, soy free, and dairy free diet.  The food is usually really gross, and finding the correct foods can be very frustrating and costly.  
Our Tiny Princess did get her brand new AFOs today! They are super cute, but Ella is much more interested in taking them off.  We also learned that she has developed a new cataract in her right eye that at some point will have to be removed.  That news was kind of frustrating, but honestly once I heard it, I took a deep breath and moved on.  
We have been taking each day as it comes.  My husband has been blessed with a 2nd job to help with the medical bills that keep coming, and for the little things like new foods that have a crazy price tag. Ella has been talking more and more (when she wants to), and has started to blow kisses at the people she loves.  She is also starting to warm up to strangers a little more which makes me very surprised.  If I was this little girl, I don't know how trusting I would be with anyone coming near me, let alone giving them a smile and hug. 

Friday, January 18, 2013

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

It has been quite awhile since I have written anything and I do apologize.  Our holidays were fantastic with lots of love, excitement, and happiness.  We did learn the results about her muscle biopsy, and she has tested negative for a mitochondrial disease! This is fantastic news because now we have knocked down another  hurdle, and brought her closer to the possibility of the heart transplant.

Our Tiny Princess has been making some serious strides with her development, and has begun to walk further distances then ever before!  We are looking into leg braces (or AFO's)  for her to help fix some small issues she is having.  Of course she does not know anything is wrong with her style of walking, and is just concerned about being able to keep up with her friends.  Just looking at her, you can only see a very happy, energetic, sweet toddler, ready to get into anything and everything.

It has still been a very trying adventure, but we treat each bump in the road like it isn't even something to worry about.  After many discussions with doctors about a feeding tube, the "understanding" side of me is ready for the surgery.  The seriousness of Ella dropping into another hypoglycemic episode is real, and the knowledge that we are VERY lucky that she not only survived, but came out unscathed weighs profoundly  on our decision. Our Tiny Princess is  your typical 2 year old, in the since that she will not eat when she is upset.  That scares me.  She will go hours without eating, and with most kids this is not an issue.  With Ella on the other hand, she doesn't have the same reserve.  She weighs 20 pounds on a good day, and the slightest hick up will effortlessly send her into a tailspin.  The mother side of me (and my husband can agree) does not want her to have it.  It's one more surgery, one more doctors appointment, one more thing that could go wrong, and one more push to the realization she is really sick and not your "normal" child.  Then I look at her sweet face and see the understanding, the happiness, the love, and the inspiration that takes each medical situation with such grace.  She does get frustrated with the testing, but she doesn't let it ruin who she is.  It's amazing what a Superhero she really is.

Our Tiny Princess has LVNC/DCM, EoE, hypotonia, congenital cataract, and developmental delays.  In her mind, she is none of that.  She is a sister, a daughter, a friend, a student, a destroyer of paper, a snuggle bear, and a holy terror.  She knows her limits, but doesn't allow them to limit her.  She is amazing!

Tuesday, September 18, 2012

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. 
~ Unknown 

The biopsy/lens implantation surgery turned out a success! Our Tiny Princess did not have to spend the night in the hospital, and her lens implantation is doing great.  It was very nerve racking hearing the anesthesiologist explain the complications from the anesthesia, and allowing her to have the surgery.  I cried about such a simple surgery for fear that it could cause life threatening damage.  My Superhero proved to be stronger then me as always.  

Now we have to wait for the results. We go about our daily routine of going to work, dropping the kids of at daycare, celebrating birthdays, planning to attend weddings, and celebrating holidays while having this little fear in the back of our minds about the unknown.  Will the results change how we love Our Tiny Princess? Of course not, but it does cause some stress and fear that cannot be avoided.  

Following the surgery, we looked at her discharge paperwork and noticed something quite different.  Our Tiny Princess has a different diagnosis then what we were originally told.  This was quite shocking to us because no one ever corrected us when we talked to the doctors.  

Left Ventricular Non-compacted Cardiomyopathy.  

Such a long diagnosis for such a little girl.  After researching the information, we have found that Dilated Cardiomyopthy is often times the wrong diagnosis that they give children with Left Ventricular Non-Compacted Cardiomyopathy (LVNC).  The treatment doesn't change, just the name and the rarity of her condition does.  It also explains the reason behind the biopsy, and the possible genetic link to her condition. 

With each new finding and each new test, we still hold on strong for Ella.  Life is always going to be full of surprises and changes for everyone, how you handle each situation makes you who you are. 

Wednesday, September 5, 2012

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough troubles of its own." Matthew 6:24, The Bible

Tomorrow is finally the day for her biopsy.  It has been a very long wait due to the fact that we are trying to schedule an eye surgery at the same time. The eye surgery seems like a needless procedure to some people because of her condition, but we are preparing her for a very long life.  We want her to be able to see as normally as possible when she gets older.  We treat her like she will live until she is old and gray.  I will admit that I assumed this would not be a difficult task because all the doctors are in the hospital, why can't they just do two surgeries at the same time?  Apparently this is very hard to coordinate due to different operating days for the surgeons, finding a cardiac anesthesiologist, and finding an OR with the right equipment to preform both surgeries.  

Another difficult task was finding a surgeon willing to preform the muscle biopsy.  From what I can gather, this is a simple procedure where they take a small amount of muscle from the leg.  However, it's the condition of her heart that is being questioned.  One nurse admitted that fragile hearts like Ella's scare most nurses and doctors that are not cardiologists.  

Hearing this really engraved in my mind how incredibly lucky we really are that Ella is doing so well.  I've heard it time and time again, people look at her chart and ask, "How long have you been on the transplant list?"  When we tell them we aren't, they look at Ella in shock.  "She's doing great right now.  She's a fighter.  There is not a need to put her on the list when she would be at the very bottom."  That is what I tell people with a smile.  I'm so grateful to be able to have every moment I do with her knowing we are on borrowed time.  I'm very lucky and blessed knowing that there are so many other parents out there that don't get the time we have with her.  So many parents would kill for just one more day, and we have had close to a year.  I thank God every day we have her.  We live each day to the fullest that we can.  We play with her, cuddle her, and love her every moment. 

She is our Tiny Princess Warrior! Hear her squeal!

Thursday, May 31, 2012

“Happiness makes up in height for what it lacks in length.”
Robert Frost
5/31/12  Our life has, for once, been pretty uneventful.  Our Tiny Princess had an increase in her heart medication, which has made such a huge impact on her personality.  I can tell she isn't getting tired as much, and loves to crawl as fast as her little body will take her.  She squeals and giggles as we chase her around the house.  She just seems to love life, and you can see it by the huge smile she has for everyone. 

We've been to Houston, but nothing has really changed.  The only thing we are looking at doing is a muscle biopsy. Honestly, it's a kind of scary procedure.  The doctors in Houston have decided that waiting until she was needing a heart transplant to do the biopsy was not a good idea.  She seems strong enough to be able to handle the biopsy now.  The question is, are we strong enough to allow this procedure to be done.  She will have to be put under with an overnight hospital stay.  There is a possibility she will not handle the biopsy well.  It also means that we will have to face the truth about a heart transplant.  Will she qualify?  If she has a mitochondrial disorder that will attack her new heart, she will not be allowed to receive one.

 Part of me understands that if she has that issue, giving her a new heart would not be fair for someone who could live longer.  Part of me doesn't care.  That part of me wants to be selfish and demand the heart.  I mean, why not? I've already had to say goodbye to one child, is it really fair to have to say goodbye to another one?  People think I have it together, but I really don't.  I think like most parents would, but know those thoughts are not going to change the outcome.  All I can do is pray.  Pray that God will do what is in his plan, but pray that she does make it.  I'm human, and I'm still a little selfish. 

Selfish, hurt, confused, scared, and hopeful are the feelings that drive us everyday. What drives us the most is the beautiful smile that greets us when we call her name,  Ella.

Thursday, April 12, 2012

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.
Eleanor Roosevelt

A little hiccup is all it takes.  Something so small that can only be seen under a microscope can cause the scale to no longer tip in our favor.  Our Tiny Princess hasn't been feeling well lately.  She caught a stomach virus, and her fragile body is having a hard time fighting it off.  The progress she had gained these past couple of months has been stripped away so quickly.  She's lost weight.  Her heart function has declined.  

My heart breaks while fear fills the cracks.

Our Tiny Princess still fights.  

The amazing doctor in San Antonio keeps such a great eye on her, and stays completely honest with me.  We went in yesterday to make sure she wasn't declining.  She looks fine.  She plays. Her valves are not leaking.   She laughs.  Nothing looks abnormal until you look inside her body.  The doctor looked at her heart with concern, fear, and confusion.  Then he looked up at me and said the words I feared. Her heart function has decreased.  Not a lot, but the worry is all over his face.  He left to talk to another doctor in the office, and to look at blood work from last week. 

I prepared for another hospital stay.  I sent a text to my husband to come quickly. The doctor came back in, and said we just need to keep an eye on her and increase her medication to give her heart a break.  They want to see if she can fight this off.  My Tiny Princess can fight this off.

My husband is so good with her.  He is nursing her back to health.  He is making sure she has everything she needs to fight.  One more day of watching to see if she needs some help. I think we will make it.  She is my little fighter after all.  One more battle won.  Now to prepare for many more, and to tip the scale back into our favor.