mtDNA Variant-- HUH?

If there is one "truth" to mitochondrial disease, in my opinion, it's that things are always complicated. Ordinary colds could cause extraordinary complications; "simple" surgeries could become life-threatening; testing is abundant and often leads to even more questions; results from testing are always difficult to explain and understand- nothing is easy in the mito world.

With that said, I am taking on the complicated task to explain what we learned at Areli's appointment today. As you know we are trying to find the exact mutated gene that is the cause of her mito. It is proved she has Complex 3 Deficiency (the third level in the process to turn food into energy only works at 17% in her).  However, the four genes that make up the 3rd complex were all normal so we tested genes with known isolated liver involvement, outside of the complex 3. So far all of those have come back normal as well.

Still following me?

A test did come back though that might be leading us somewhere. There are two different types of DNA that your mitochondria are made from. One is called mtDNA (mitochondrial DNA). This comes directly from the mother, it is in her eggs before they are even fertilized. The other is nDNA (nuclear DNA). This is recessive from both the mother and the father's DNA. Both could be the cause for the mutation which lead to mitochondrial disease. Well, they found mtDNA variant at a low heteroplasmy level in Areli. What the heck does that mean?? This means they found abnormal mtDNA in her blood, but there was more normal mtDNA than abnormal. This could be the start to finding out where her disease originated from. It could be directly from my blood line, or it could be that when her DNA was splitting/replicating, it split wrong and the abnormal DNA continued to replicate overloading high energy organs (liver) with "bad" mitochondria's 

Still there?

Okay, so the question is what do we do from here? Her team of doctors are meeting next week to discuss the next steps for Areli. More than likely thoough, I will be getting my blood tested to look for mtDNA variants and we will do, yet another, liver biopsy. Because that is the only way to truly know if the mtDNA is abnormal in her liver as well.

Hello..? Hello..? Anyone out there..?? 

If you read through this whole thing, you rock!!! And don't worry if you don't quite get what's going on, I still have trouble figuring all this stuff out, after all it is mito and it is complicated! 
As a treat for getting through all this mummble jummble, here are some pictures! Hope you enjoy!

From our appointment with neurology today.

Love,

Mama Linnea

 

Failure to Thrive

Today we, or should I say Areli, had her G.I. appointment with Dr. M.

We went because Areli hasn't been gaining weight, despite eating like a grown man. Literally she eats more than I do. She eats 3 full meals a day, more than what I put on my plate and then she eats a snack every 45-60  min. It is exhausting to feed this child. It is also very concerning that she eats so much and is not gaining weight. Dr. M went through her growth chart with me and Areli has completely plateaued. Instead of the graduated growth curve that children should follow, Areli has stayed level at the same weight (give or take a few oz. gained and lost) for the past 5-6 months. Areli has now been labeled, Failure To Thrive. That phrase kind of sucks huh? Soo, now we have the daunting task to up her calories even more. I say daunting because I don't know how we can pack even MORE calories into this little body than we already do! But thanks to a dietician we met with we have some creative ways to pack on the calories and protein. Areli also had blood drawn to test her thyroid to see if maybe that could be the culprit of no weight gain. We will also test her blood sugars to see if that could be the problem. Wish us luck that we get some weight on this baby and that we find out why she is "Failing to thrive" because if she doesn't pack on the pounds, we may be heading down the path of a g-tube.

On a better note, despite no weight gain, Areli's head circumference and length are both growing right on track. Also, this is the best her little liver has ever been!! I am not sure if it is due to the CoQ10 or what, but for the first time since she has been alive SOME of her liver labs are IN THE NORMAL RANGE!! And most of the others are at an all time low. Her physical exam usually presents with a hard and slightly enlarged liver (by 1-2 cm), but today for the first time ever her liver was NORMAL, soft and the correct size!! Let's go ahead a give Areli a "Whoot Whoot"!!!!

Hopefully we get answers soon! (I feel like I've said that a time or two before, always waiting for answers for something with mito). Until next time friends!- I must go feed the beast, she's hungry AGAIN!

Love,

Mama Linnea

Well, Hello CoQ10!

So, today is a big day for Areli. Today she had her first dose of her mito cocktail. To those of you who are experienced in the mito world, this is a common, everyday ritual. For those of you who don't know, a mito cocktail is composed of different vitamins and supplements used to 'treat' mitochondrial disease. If you recall there is no cure for mito, so we make efforts to try to slow the progression of the disease and increase the quality of life. Many patients can take upwards of 50 pills a day to treat their mito. Every cocktail is specifically custom to the paitent and their specific symptoms/needs. To start, Areli is only taking one supplement, Co Enzyme Q10 or CoQ10.

This little bottle, that holds the potential to slow the progression of Areli's liver disease, to improve her quality of life, to give her little body more energy so her organ systems function more productively, is EXPENSIVE!- to say the least. So a HUGE thank you to our local Miracles for Mito Foundation, who made this available to us. There's no way to thank someone who is improving your child's health. 

Be sure to check out the founders of Miracles for Mito, Maria at Moments with Jacob and Heather at Samantha's Mom. They are amazing woman and mother's who have done incredible things for the mito community and patients. 

Areli Is Full of LOVE.... But Not A Lot Of Fat..

Mito can affect multiple organs, especially ones high energy functioning like the heart. So today we went to see the cardiologists at Children's to look at heart involvement. Areli had an echocardiogram and a EKG done, which she did great at. What did they find you ask? Well they found a WHOLE LOT OF LOVE in that little heart of hers! But on a serious note pertaining to her mito her heart is looking/pumping great. Unrelated, they did find a PDA or Patent Ductus Arteriosus. The ductus arteriosus is a leftover fetal artery connecting the aorta and pulmonary artery. If this artery stays open after birth, it's called a patent ductus arteriosus. So if you're not a medical student, this means that there is a "leak" in her heart. In utero, the ductus arteriosus brings blood away from the lungs (since the baby doesn't need to breath), every baby is born with it, but since the opening is no longer needed it closes a few days after birth. It is common in premature babies for the ductus arteriosus to to remain open, but rare in full term babies. In a child with PDA extra blood gets pumped from the aorta into the pulmonary arteries, which can lead to the heart and lungs working harder and lungs can becoming congested. Areli has a relatively small opening, so we are hoping it will close on its own, otherwise a devise will be put in to close it off.

Even though her heart is full of love, her body is not full of fat. She is up about one ounce since her 9 month check up. One ounce in 3.5 months and this girl can EAT! She went from the 80th percentile to the 10th percentile, completely dropped off the growth curve. With the amount of calories she takes in and lack of weight gain we are concerned something is wrong. So we will take another trip to see Dr. M her GI specialist to try to figure out whats going on. Hopefully we can figure it out before she gets too skinny. I'm worried about this. Until next time.....

Love, 

Mama Linnea

Tighten Up Your Buns, Areli is ONE!

*This post is also being featured on the Miracles for Mito blog. Every week there is a different blogger, writing about what it is like day to day to care for a child with mito, or who live with the disease themselves. Check it out, new posts every Sunday!

Baby girl I can't believe you are ONE! I know everyone says it but this year has flown by! Your first year of life didn't go as planned.. You had to endure more hospital stays, procedures, anesthesia and blood draws than most adults. I wished at every moment I could take your place and feel the pain for you. You are one tough cookie, my love. Even though your first 365 days of life weren't exactly how we envisioned, you have lived and fought every second of those three hundred and sixty-five days. You have 10 perfect little fingers and 10 perfect little toes. You have a beautiful smile and infectious laugh. You are the best little sister and perfect little daughter. You have conquered your hurdles like an Olympic track star. You have accomplished things we weren't sure you would be able to. You are showing us you are stronger than we know. You have taught us patience, acceptance, perseverance, advocacy, and strength. You have taught us it is okay to cry. You have given me a drive and purpose- to be the best mother/advocate for you I can, and to raise awareness for Mitochondrial Disease. You have blessed us for a whole year and will bless us for the rest of our lives. You have thousands of supporters all around the world and you, my child, is spreading awareness of your disease before you can even talk. I couldn't be more proud of you and I couldn't be more blessed that you are ONE! Here are some photos of our celebration:

Areli's watermelon cake!*

 

Big sister Leilani eating a cupcake

Areli's cousins and Aunt.

*Watermelon cake recipe: it is really very simple, cut the watermelon to shape, frost with Vanilla Greek Yogurt (or any other flavor) and decorate with fruit! We crumbled chocolate and sprinkled it on the sides, but a good substitute would be crushed nuts- ENJOY!

And a piece of Skin...

Areli had her skin biopsy on May 28th. We did a skin biopsy to see if the Complex 3 is deficient in the  mitochondria in her skin, the same way it is in her liver. This doesn't mean there is something wrong with her skin, it is just another piece to her complicated puzzle.

Smiling before the procedure

She did great! Our girl took it like a champ! They took a pretty good size chunk of skin, she barely cried and then fell asleep before they even put the bandage on.

Cuddling with Daddy after the biopsy.

Playing at Oma's house after the biopsy.

Exhausted from the day.

Baby girl slept soundly that night and so far her biopsy sight is healing perfect! Just no swimming for 2 weeks :(

Love, Mama Linnea

Thank You

HELLO WORLD!
I have a couple updates to write, but as I sat down to start a post I realized just how loved our little Areli Rose is! I would have never imagined people from all around the world would be so invested in her story and journey. She has readers from 14 different countries!! So to all of you out there near and far (very far) I wanted to say thank you! Thank you for following, thank you for your prayers and well wishes. I just hope that Areli can inspire hope, rising against the odds and appreciation for  every moment because tomorrow isn't promised and today is beautiful! Most importantly though, I challenge each of you out there to educate 5 people about mitochondrial disease, and challenge them to tell 5 more people and so on and so forth. This disease kills more children than all childhood cancers, yet no one knows about it. Every 15 minutes a child is born who will be diagnosed with mitochondrial disease before the age of 10. We NEED to spread awarness. We NEED to find a cure. We NEED Mitochondrial Disease to become a household word. Thank you for your continued support my worldly friends!
Love, Mama Linnea

Still on the Journey...

So where to begin? A lot has happened this month since my last post, I guess I'll start where I left off!

Areli had a brain MRI earlier this month, which I will spare you the horrible details of.  All in all, after a day full of bumps in the road and a lot of tears from Mama and Areli, we learned that Areli's brain is normal!! Which means that we have a better chance of being eligible for a transplant, if that day should come AND it means that the suspicion of seizures is gone! The "seizure-like" movements she does turn out to be a movement disorder, which should resolve itself.

This month Areli also demonstrated another symptom of mito. When a persons body is energy compromised, a day in the sun, stressful situations, or too much activity can cause an energy crash. An energy crash can result in a minor to major crisis in the body. A few days before her MRI we spent a whole fun filled day outside in the sun with family and friends. Areli seemed tired, throughout the day. Her eyes seemed very droopy and she was just not as active as normal.

Notice she isn't focusing her eyes.

That evening after she was asleep for the night I noticed she had a fever 103F. For the next two days Areli struggled with regulating her temperature and exhaustion.

She slept all day for two days and refused to eat or drink anything but milk. Our day out in the sun took so much energy from her it took two full days to recover. She ended up having another energy crash after her MRI which ended with another scary high fever and lethargy. We are now learning how to monitor Areli's energy and heat intolerance so that she can still enjoy the summer without the repercussions. 

Areli's gene results also came back this month. If you remember we have been waiting on this gene work for 3 months. We were hoping with these results we would know more about her specific disease and prognosis. The 4 genes in Complex III all came back normal. Which sounds good, but actually isn't. The doctors have absolutely no prognosis and we still don't have a specific diagnosis. There is only so much they know about this disease. They know Areli has complex III, yet the genes in complex III are normal, doesn't make seems huh? Unfortunately, there are A LOT of unknowns with mito. So in an effort to find her specific mutation we at doing an entire DNA sequencing. They took my blood, Daddy's blood and Areli's and will try to find a mutation. This will take years to do. In the mean time we are testing a few other genes associated with specific liver involvement, but it is looking like we will not have a specific answer for years, which is pretty common in mito. 

Areli will also be getting a skin biopsy in a couple weeks and will see a cardiologist to rule out heart involvement. We are also starting her on her "mito cocktail" ( the only treatment for mito which is different supplements and vitamins).

Ahhhhhh... It's Been Awhile...

It's been awhile since I have written. This has been the longest Areli has gone with out any major appointment or procedure- about a month! It has been nice to just sit back and be "normal", so I took a break from all the medical posts. This is also the longest she has gone without getting a blood draw- but that will end soon.

Although this quiet month was welcomed and enjoyed, it didn't go completely without incident. Areli battled another cold, which left her with a double ear infection and a dose (or 20) of antibiotics. She is still pulling on her ears, so I am not convinced they did the trick. We also received a call from Dr. M (Liver specialist) and Areli's ammonia levels were elevated in her urine, so we need to do blood work to check if the ammonia is in her blood or not. Elevated ammonia is another sign that the liver is not doing its proper job and too much excess ammonia is very dangerous.

There were also positive developments in Areli this past month! She is starting to trust more people who are important in her life. I, personally, think this is because this is the longest she has gone without someone "hurting" her, so I am sad to have to bring her to the next blood draw. She also has become just a little crawling machine, which has eased some of her fussiness. Most importantly though, we finally went to her therapy evaluation. Areli did very well and it was decided she would only need speech therapy and learn-to-trust-other-people-and-separate-from-mama-at-least-long-enough-so-she-can-pee therapy. Okay, that last one may or may not be a real therapy, but we are doing it anyway!

Finally, today was our first meeting with the Miracles for Mito support group. I don't think I can sum up the meeting in enough words to fit in this post, it was that great! It felt very comforting to "belong" somewhere. All the families were great and welcoming-you could feel the support they have for one another. We had the chance to hang out with some of the coolest, most beautiful kids ever and I was able to meet and speak with doctors who will be important to Areli in her journey with mito. I am very thankful for this support group because without it I wouldn't know one other single person with this disease. It is already a scary road to be on and because of this wonderful group we don't have to be on it alone. I left the meeting today feeling very hopeful and uplifted.

As great as the break from doctors was, I am anxious to "get back at it". We have Areli's long awaited neurologist appointment Monday. The status of her brain will give us many answers as to which direction her disease may take. Stay Tuned...

 At the support group

Sleepy girl fighting her cold

Cuddles

We also celebrated big sister Leilani's 3rd birthday! 

HAPPY BIRTHDAY BIG GIRL! 

Love,

 Mama Linnea

Mild Portal Fibrosis

Everyone's heard of "stages" when it comes to cancer, like if someone catches it early they might be in "stage 1 cancer", it works the same way for organ failure. Specifically pertaining to the liver the stages are:

S0- no fibrosis present
S1- mild portal fibrosis
S2- moderate periportal fibrosis
S3- severe fibrosis
S4- cirrhosis (end stage)

In simple terms fibrosis is scarring. The healthy tissue is damaged by scarring which compromises the functionality of the liver. Cirrhosis is developed from fibrosis. When there is significant scarring the liver cannot function properly causing organ failure.

Areli's biopsy at 2 months old showed S0- no fibrosis present, her biopsy at 8 months old, just 6 months later, showed S1- mild portal fibrosis. We knew her liver disease was progressing, but not at this rate! It is hard to estimate how long it takes to progress into the next stage depending on the specific disease, environmental factors etc, each person is a little different. The "average" time it takes to go from S0 to S1 is 15-40 years and Areli did that in just 6 months. We've always known she wasn't average though. I was made aware early on in her medical journey that a transplant was a possibility, but it always seemed so far away, such an incomprehensible thought that my mind did just that, didn't let me comprehend that it just might happen. Before, while in S0 there was always that possibility of reversing the fat in her liver, there was always that option of no liver failure. Now, in S1, there is irreversible damage being done and since there is no cure for her disease the progression will continue and that incomprehensible idea may be reality sooner than originally thought. When she was first diagnosed with liver disease it was hard for my brain to accept and understand, but I overcame that, then she was diagnosed with an incurable progressive disease and I am (still) learning to accept it, now she is in S1 liver failure. I understand the progression of liver failure and her disease, but my mind won't allow me to comprehend that my baby is in stage one liver failure. Although it is only S1 at this point- to be on the spectrum is something inconceivable to me at this point. 
Don't get me wrong, I am more than grateful that Areli is as healthy as she is right now, many babies with her disease have died by her age or not met the milestones she has. It is not fair for any child to go through. No child should have diseases, no child should die, no child should suffer, no child should go through organ failure...

I just hope I am a match so I can give my baby my liver.

Love,

Mama Linnea

It's Official.....

We had another appointment at Children's today. This time it was with Dr. M again. It was like every other appointment we have had. I pulled into the over-crowded parking garage, this time I was lucky and found a snow banked spot near the front. I gather up Areli and our belongings and head for the main entrance. Everyone at Children's is always very friendly, a glance and a smile or a "have a good day". We check-in, get her hospital bracelet (which made Areli very happy she smiled as I put her jewelry for the day on her wrist) and head to the couches under the big letter "D" hanging from the ceiling. It wasn't long before we were called back. Then it is the process of getting Areli naked, weighing her, measuring her head, her height, temp, and blood pressure. Today she came in weighing almost a pound less than her last weigh in 3 weeks ago. Then Dr. M came to see us. Areli likes her (so do I). We start like every other appointment, how has she been? how is she eating? anything different? anything you are concerned about? I really wasn't expecting this appointment to be about much, I thought it would be just a regular appointment...
Dr. M starts to tell me that Areli does indeed have Mitochondrial Disease. Mitochondrial Hepatopahies(-of the liver).
I always thought the moment they told me what she has I would become an emotional mess, it's been a long time coming getting a diagnosis, but I guess because it has been a long time coming that I was ready for the diagnosis, I mean it's not like they just threw Mito at me, we have been exploring Mito for awhile now. I knew what to expect. We still have more specific tests being done to try to put an exact name to which Mito disease it is, then that will give us more of an idea of a prognosis, quality of life, etc that she will have.
we go on to speak about her "episodes" I wrote about last post. Since seizures are common in Mito we are now seeing a neurologist and will have to have a 24 hour EEG, which means another night in the hospital. Sadly, neurologists are a hot commodity because the next available appointment is for April 8th. If she has more episodes one after another again like last week they will admit her and we will be able to expedite the wait.
Then we spoke about how she lost almost a pound in less than a month.Since she isn't crawling yet and she is eating more because we have introduced more solid foods, there really is no reason she should be losing weight so we met with a nutritionist to see what we can do to up her calories even more!
 I wrote earlier this month about her needing physical therapy.(We haven't started yet). Since Areli doesn't babble (she just growls, a lot) they also want to do speech therapy. In an effort to do early intervention we will be starting speech therapy, physical therapy, developmental therapy, and occupational therapy. The works.
 Lastly, since Mitochondrial Hepatopathies is so rare, they asked us to participate in a research study. There are less than 200 patients in the entire country involved with this study. Basically they will follow Areli for at least 5 years through her journey with Mito Hep in hopes that they can learn more about this disease to help little babies in the future that are dealt the same cards as our Areli was. Although this study most likely won't help our girl, I strongly believe in letting doctors learn from our life and Areli and her experiences.

Love, Mama Linnea

Misconception

Areli is such a misconception. When we have a span of two-four weeks where we don't see a doctor, you tend to forget she is sick because she looks so 'normal'. That is if you don't notice her scratching her skin because her abnormal functioning liver makes her itchy. Or if you don't know that her struggle to roll over and crawl may be due to muscle weakness, not laziness. You may think she is spoiled or held too much, but her extreme attachment to me is because of countless pokes and procedures where I have handed her off to someone who 'hurt' her-she just knows if Mommy is holding her, she won't be hurt. Some people say 'she can't be THAT sick, she looks so healthy!'. Yes, my girl looks normal and appears to the untrained eye very healthy, but she's not. The disease that they think she has is progressive and even though she may appear normal it may not stay that way and I learned that this week. 

Areli has always been a difficult (for lack of a better word) baby. The past couple weeks she has been very happy, which we welcomed with open arms! It is truly amazing to hear her laugh everyday, because it is usually the opposite. While we were raveling in the joy of the new happy Areli, something was brewing inside her little unseen sick body. 

To make you understand more I want you to flex your neck muscles really hard until the point your head shakes very fast.

Areli started to shake like this. Her hands would clench, every muscle in her upper body tightens, she holds her breath, her head shakes for about 30 seconds to 2 minutes, then she exhales deeply or sometimes let's out a scream, then continues to play like nothing happened-happy and all. The first couple times I didn't think much of it, but then she started doing it upwards to 20-30 times a day. I called the doctor concerned she is having seizures (seizures are common with this disease). She has since stopped doing it so it is hard to officially call them seizures since the doctor hasn't been able to witness them (I tried to catch them on camera, but it doesn't do justice). We see the doctor next week and will discuss what to do from here. 

I realized that for the rest of my life I will be watching my girl for new symptoms, watching her for any sign things may be getting worse. Because that is the reality of a progressive disease-you will never be as healthy as you were yesterday. Okay, maybe that is a pessimistic way to think, but as soon as we relax into life, her disease seems to remind us it is still there.

Love,

Mama Linnea

Baby Steps

We were supposed to see the famous Dr.VH today, I was very anxious to see him, families fly across the country to see him. He is like THE MAN! Buuuut he had an emergency and had to fly to Europe. So we saw Dr.T. Areli likes her. She has seen her before and throughout our journey to a diagnosis, Dr. T has called often, just to check on us. We have been lucky, we have had great doctors throughout this. Dr.VH passed along everything he needed so D.T could fill in for him. To start, I guess I need to back pedal to Monday where Areli had bloodwork done to test for different mito genetic disorders like respiratory chain defects and lysosomal defects and more I just can't remember all the names. Today, Dr.T informed us that Areli's liver biopsy was VERY fatty. Worse than her biopsy from 6 months ago, which means her disease is progressing. Ironically, her liver panel is the lowest it has ever been. (?) confusing. My impression is they think it is mito over CESD.  However we are still testing for it, which is pending, and they believe if she does have it she has a milder form of Wolman's Disease. As for mito, her biopsy revealed Complex III Deficiency. This test usually takes 2-4 months to perform, but Dr.VH expedited it, so we got the results in a week. While I am happy he got it faster for us I have to admit I am very confused as to why. This doctor deals with SICK children everyday. These tests that take months are nothing new to him, so why'd he speed up ours? Like I said it sucks to be the family that needs VIP treatment, but if your child's sick, it's nice to have the VIP. Dr. VH sent off another piece of her biopsy to be retested to make sure this wasn't a fluke and if Complex III Deficiency is apparent again they will test 4 specific genes to find the mutation. We have hope that she would have a milder form of Complex III because so far no renal involvement has presented, however they tested her kidneys today to monitor them for involvement. Hopefully Dr.VH can expedite this round of testing as well!
Areli rolled over from back to tummy for the first time months ago, but didn't do it again, until the past couple of weeks she has done it a handful of times. She has never gone tummy to back, regardless of the amount of tummy time. She can push her chest up off the ground and working on getting her butt up. If I put her in the "crawling" stance she will stay like that for awhile, but not make any attempts to crawl. She loves to stand and will "walk" assisted, but will not roll over or try to crawl, so we are starting therapy to help her so she doesn't fall behind. Some babies skip crawling and go straight to walking, but I think if my girl is already going to have problems with muscle weakness she needs to start young building all her muscles to be as strong as they can be. I refuse to let her miss a milestone, so therapy it is!!

Love, Mama Linnea

This..or..That

Mito has been on my mind every second, of every day since it was muttered to me in that doctors office one afternoon. I have consumed myself in complicated mito research, trying to understand the diseases and its many ugly faces. Learning, investing, and crying over little mito children and their story, their struggle, their victories, their journey. I couldn't relate to any one specific story though, because mito doesn't affect any two children the exact same way. Every one with mito is unique in their disease. So I spent my nights dreaming of how Areli would be affected. How will her disease progress? What ugly face of mito will I become accustom to? But every now and then I would make myself step back and remember, we aren't even diagnosed yet, it may not be mito. Breathe, and wait.

In the back of my mind I had hope the past 7 months would turn out to be a fluke of some sort and they would tell us her liver looked normal. That her enzymes went down and this would become just a weird unknown event and she would grow and live a normal little girls life... There is no way to describe the moment you are told your child has a disease. The moment the little bit of hope you had, dwindles away. A life time of obstacles, doctors, hospitals, unknowns flashes before your eyes.

Areli's biopsy results were in. Her liver is very fatty, which we knew, but most importantly her mitochondria is abnormal. They are doing more testing though, to get a definitive diagnosis. It is narrowed down to two possible diseases. Mitochondrial Disease ..or..Cholesteryl Ester Storage Disease This..or..That.

While Cholesteryl Ester Storage Disease (CESD) isn't mito, it isn't any more comforting. It is even more rare than mito, with even less research and knowledge. There isn't a cure for either. They both have unknown future/prognosis. Death is an all too common result of both diseases. They both scare the hell out of me. This..or..That.

I find friends and family asking me which we are 'rooting for', which is the less of two evils. Not that I can control or pick one (because frankly I wouldn't choose ANY) I have concluded at this point. I. Don't. Care. Either way my family's life has changed. Either way we have a battle to fight. Either way we have a BEAUTIFUL baby girl. Either way we will, SHE will survive. This..or..That.

This..or..That

This..or..That

This..or..That

It doesn't matter, THIS is what matters:

Love, Mama D

Liver Biopsy #2 & #3

Areli's biopsy was scheduled for 2:30pm at Children's Hospital on Wed. January 16. (Her 3rd time being put to sleep in 5 months). The day started out good, Areli was in a very good mood as I loaded her up with milk before she had to fast for 4 hours before the procedure. ( She usually eats every hour-two hours to keep her blood sugar up, so this is very long for her).

Happy silly face

We headed to the hospital at 10:30 am and her happy mood didn't last long, she cried the entire way there and she had officially started her fast so no boobie until after the procedure. She was NOT a happy camper! We checked in and she had her blood drawn right away, then we checked in with pre-op. She changed into her hospital gown and we waited and waited. Somehow I got her to take a quick nap and she woke up in a semi better mood, just as long as mama was holding her.

Before the surgery, we did an ultrasound to mark the spot Dr. M would go through the ribs to the liver, then finally they took my baby girl back. My mom, Hayley and I went to grab lunch and a coffee and before we knew it Areli was done! The past two times she has had anesthesia she would be screaming her head off by th time I was brought to recovery, however this time she was quiet and sound asleep. 

Dr. M took two samples of the liver, one to test now and one to freeze for later tests. Each were about two cm in width and an inch in length.

We were then moved to our room on the 8th floor with a view of the Rocky Mountains. 

With the combination of anesthesia and morphine she received, she was very tired and pretty much slept the rest of the day. She got lots of snuggles from Oma, Hayley and Mama.

She then had more blood drawn, once 4 hours after her procedure and then again 8 hours after her procedure to check for internal bleeding and she was healing just fine. 

A volunteer came by and brought Areli a present, a homemade blanket, a book, and a teething toy. 

We then settled in for the night.

Areli had a very restful sleep, while Mama on the other hand didn't sleep at all; however morning came quick and Areli was MUCH more awake and alert and happy then she was after her surgery. We were quickly discharged and now we have the uneasy game of waiting for results. 

Looking at the mountains with Auntie Hayley 

When we got home, Leilani ran to us both and said "Oh I'm so happy you two are home!" and gave Areli the biggest kiss and hug. She is the BEST BIG SISTER.

Love, Mama D