The BIG surgery

After a week of discussion, planning and testing, it was Monday, surgery day. We knew she was an add on for the afternoon which meant she could be called to OR anytime from 12 to 10 at night. The suspense was hard to deal with. Audrey's Opa came to she the stress and worry with me. Audrey was blissfully ignorant of what was going to happen. She had had teaching on Friday where they made a doll with an ostomy and a bladder catheter in the belly button and we told her where everything was going to come out. She seemed indifferent to the teaching but played with the doll all weekend and was able to tell others all about the ostomy and bag. So Finally at 3 it was time to go!! We went to pre-op and spoke to a dizzying number of people. Going over the conditional plan, allergies and mitochondrial requirements with the OR nurse, the pediatric surgeon, the urologist, the anesthesia team and the pain team. Everyone seemed well read on Audrey and I was as comfortable as I could be handing over my daughter. Surgery was supposed to be 2.5-3 hours.

At hour 2.5, I was called and notified she was stable and surgery was progressing fine. At 3.25 they called say urology was done so the surgeon was closing, finishing the ostomy and then she'd be done. Finally after 4 hours of surgery she was done and going to recovery. Both teams of doctors reported a smooth surgery with no complications. Audrey was very sleepy in recovery but since she was inpatient she didn't need to be fully awake. She was responding to questions and asking for only her princess blanket (she refuses to use hospital blankets) so we knew she was ok. The pain team had placed an epidural so her pain seemed well managed which was a huge relief!! We were back to her room by 10. She had a busy night and her vital signs were a little off but she rested well! Let the healing begin!

Back from OR, there's no more room on this tummy!

Post Op Day 1-
The days after surgery are often the most difficult. Swelling peaks at day 3-5 as does pain and discomfort. With mitochondrial disease, the body has to recover from this huge strain placed on it which has depleted any extra energy it may have had. This was complicated by Audrey's primary team of docs not knowing her well. Of all the days for her to have new doctors this was not a good one. So Audrey slept ALOT! Her body was frantically trying to make enough energy. Her heart rate was high, her blood pressure was low. She had a low grade fever and needed her oxygen. She needed extra fluid. Her pain was mostly controlled unless we had to move her but she was very itchy from the epidural. It was a difficult day for her. Some good things happened though. First her new stroller came! Yay! It had been ordered for her 2 months ago so it was much anticipated, and it was pink! Next, after major surgery, patients have to do the dreaded incentive spirometry. This forces big deep breathes to help open the lungs and get rid of anesthetics. This being a Children's hospital this mean...blowing bubbles!! Same action but much more fun! Audrey willing participated and finally her oxygen started going up and temperature went down. Surgically everything was going well. Her
mitrofanoff was draining well. Her ostomy was pink and happy though still sleeping. We did her first
bag change with the ostomy nurse. By the end of the day, we got our first smile!

Very tired mitochondria!

             The new PINK stroller!

Incentive spirometry Children's style!

,

Finally, a smile from my girl!

Post Op Day 2-
Audrey woke up bright and early asking to watch Mickey Mouse! I love my girlie! And surprise, surprise, her ostomy was working!! Yay! Today, everyone is cautiously optimistic that we are finally on the right path. It was decided to start a small amount of pedialyte, give her some blood and we were still trouble shooting the annoying itching. Overall it was a good day. We were able to get her up out of bed into a chair and she was awake most of the day. She tolerated the pedialyte well and an advancing plan was made to get us home. Home!!! After 16 days our discussions finally included home! I was feeling so hopeful!

Happy girl first thing in the morning!

Post Op Day 3-
A day of rest! Audrey finally woke up free of the relentless itching and is still pain free. Since her epidural site looks great the pain team decided to leave it in place and let her have a good day. We had to switch her pedialyte to her jtube from her g because of retching so we did not start formula yet. It was decided her anticipated discharge date will be Monday 11/25, 3 weeks from when she was admitted.

Up in her stroller!

Post Op Day 4-
We are counting the days till we can go home! Audrey woke up again in great spirits and pain and itch free! We were even able to get her to stand on her own to weigh her. The pain team decided to leave her epidural in another day since she's doing so well and the site looks good. Audrey started half strength formula in her jtube! Yay!! Now we have to see what happens with her ileostomy output since it's been high. Urology also came and took out her foley so it's just her mitrofanoff draining urine now.

Post Op Day 5-
It's finally time to remove her epidural. Her dressing is lifting now so it's not safe to leave in. Everyone is nervous but hopeful since it was able to stay in so long she has missed the worst of the post op pain. They started around the clock pain medicine before taking it out so she wouldn't get behind in pain. Her feeds were advanced to full strength!! For the first time in nearly 5 months, Audrey is getting formula!! Her pain ended up being well controlled all day. What a relief! Our biggest problem was getting the ostomy bag to stay on. It's close to the dressing for the mitrofanoff so there isn't a lot of skin to make a good seal. By the 4th bag we both had our break down. She cried that she was scared and so was I. This is one more problem and complication in her life. We are trying so hard to make things better for her, I pray this was the right path.

A big leaky mess!!

Post Op Day 6-
Today we are not changing her feeds. This is what she will go home on and we will plan to advance her very slowly. We are going to start capping her mitrofanoff today and draining every 4 hours. This will be the plan for the next 2 weeks so I hope she does well. Her pain medicine is now PRN and she's tolerating that well. It was a restful day in preparation for a busy week!

She can sit up alone now (to play princesses of course)!!

Post Op Day 7-
Going home today!!

Surgery

I'm terrified. It's 630am but I've been up since 4 and was tossing and turning the hours before that. I'm filled with doubts about the choices that have been made and where we are going with her medical care. With each step we've taken, it's been the one I said I wouldn't do to her. Today will be a life changing day for Audrey and I hope with all of my heart it will be for the better.

So Audrey was supposed to have a cecostomy tube placed last Monday. This tube would have enabled us to flush her colon from the beginning rather than torturing her with enemas to clean her out from the end. However, thanks to the brilliance of her surgeon, a contrast enema showed the valve between her small intestine and large intestine didn't work. I was very disappointed since this really limited our options but I was thankful we found this out ahead of time because it could have meant months of trying to make something work that was never going to work to begin with. After discussions between her team it was decided that an ileostomy would be her best choice. This is where the end of her small intestine is brought to her abdominal wall and the poop drains into a bag. This would bypass her dysfunctional colon completely and hopefully allow her to tolerate feedings. The decision took a few days for me to come to grips with. It was ultimately the surgical fellow who reminded me that this doesn't have to be permanent. This surgery can be reversed. That was a great relief to my mind. I'm terrified of making the wrong decisions, especially ones we can't undo. My only requirement for this surgery is that we also place her mitrofanoff at the same time. A mitrofanoff is where they take her appendix and run it from her bladder to her belly button. Then when it's time to cath her and drain her bladder, we can do it from her belly button. This is much easier for her, not something anybody can see and will allow her to cath herself easily. But this is a major surgery. Both of these procedures are and a mito kid does not handle big procedures. So if we are going to do one to her, we are doing them both so she doesn't have to do this next year.

So after much discussion and planning, today is that day. Sometime this afternoon, my daughter will go to the OR and they will disconnect her small intestine and put it on her tummy and then create an opening in her belly button to her bladder. She will no longer poop from her bottom.. She will no longer need daily enemas and suppositories and buckets of miralax and milk of magnesium, we hope, and pray that this surgery will dramatically change her life so we don't live in the hospital for bowel clean outs and abdominal pain and distension. We will see...

This is Audrey with her ostomy doll. She learned what it's for and why it's there and how to put the bag on. She was also site marked for the location of her ostomy, where it should work best. X marks the spot!

Motility testing

This week had a big note on my calender for the past few months. This week Audrey's motility test was scheduled. We have been waiting for this since the beginning of April. While at that time I was on the fence, it became more and more obvious that this was something we had to have done. I came to the hospital with mixed emotions. First, I was so nervous that the test would be "normal." Not that I won't something to be wrong with her, but her GI motility is anything but normal. In the mito world we are faced with test after test saying "it's not normal but it's not completely abnormal." Second, I worried the results would be awful. What if her motility was so bad nothing worked? What does that mean for her long term? Finally, I worried about how she would handle the procedure. What 4 year old wants rectal probes in place all day long? Would she be able to tolerate the pain? This was before I knew exactly what was entailed in this testing.

So with all this on my mind, Audrey was admitted on Monday for two days of "cleanout." She could not even tolerate this so it was quickly scrapped. She hasn't been fed in 4 months, how much stool could there be? Wednesday she went to the OR to place the motility probes. They pulled out her GJ tube (which we did not anticipate and it was only 2 weeks old!) and fed a catheter into her jejunum. The catheter has the pressure sensors on then every few cms. They run water through the sensors so as the intestines move, the water is moved and the pressure is measured. Then they placed the same type of catheter (only much longer) into her colon all the way through to where the small intestine and large intestine meet (the cecum for those who know). Each catheter has 8 probes so a total of 16 probes were measuring her activity. She came back to her room and was hooked up to the machine by the GI nurse who stayed with her all day. For 4 hours they just monitor her. This is the "fasting" state. What her intestines do when shes not being fed. At hour 4 she was given IV erythromycin which makes the stomach contract. At hour 5 she was supposed to be fed 8 ounces of formula in 30 minutes in her stomach. This was a huge problem since Audrey has not once in her life consumed 8 ounces at one time, hasn't had feeds at all in 4 months and hasn't tolerated feeds in her stomach for the last 18 months. We comprised to see "as much as she could tolerate." This ended up being 4 ounces in 30 minutes. She was very uncomfortable, nauseous and in pain at this point. At hour 6, a bisacodyl enema was given through the colon probe. We suspected this would work well since this was her home regimen. Sure enough with in 30 minutes her intestines moved. Unfortunately she vomited all of the formula we had given her one hour and a half before and then some. Thankfully at this point the test was over. Now I had to anxiously wait till Thursday to get the results back. Here are some pictures:

   This is a picture of the screen reading a very quite tummy.

 This is Audrey being entertained

This is the catheter that is in her stomach and jejunum. The little blue caps are attached to each sensor.

Yesterday the motility doctor and her GI doctor came to speak with me about the results. What they found was on its her intestines did very little moving. As you can see in the graph above. Thankfully her stomach did respond to the IV erythromycin and there were a few contractions made into her small bowel from that. Feeding her did not make her intestines do anything at all. The bisacodyl showed the only the very proximal part of her large intestine has movement. The distal part (the descending colon) had no movement ever. Normally the recommendation is for a distal colectomy but Audrey has mitochondrial disease. This is a progressive disease. Cutting out the piece that doesn't work may help right now but in 6 months or 12 months she may need more out and more out. We just don't know. The next option is to do a c-tube. This is where they place a button in the very begining of her large intestine which does have a little movement and through there we can do the enema flushes. This is not a long term option because we know at some point this will stop working. Our last option is to do an ileostomy. This is where we stop using her colon completely and let her stool out from her small intestine. They also found that her g-tube is located too close to the exit of her stomach. This may be contributing to her pain and may be blocking her stomach. The hope is by relieving the "downstream" obstruction in her colon, her stomach and small intestines will function "normally."

This is very hard news to hear. Though I was expecting her to have poor motility. Being told that she will keep losing what little response she has now is heartbreaking. Having to make these decision is impossible. What if it's the wrong decision? What if it only causes her more pain and suffering? With every step we take with Audrey, I am constantly weighing her quality of life. Right now the has spent 3 of the past 4 weeks in the hospital and the one week she was home her stomach was huge and she was getting around the clock pain medicine. So something needs to happen. The plan is now to move forward with the g-tube relocation and to place the c-tube. I am not ready for the colectomy and I don't think she is ready for the ileostomy. Ultimately we may end up doing one or both, I may end up regretting the c-tube. But this is the least invasive we can be with her at this time and I hope that this will buy us time to come up with a better solution for her. I have no illusions that this will fix anything or make her better. But I hope this will make her more comfortable and keep her out of the hospital for longer periods of time.

Pain

I thought I'd take a minute to post about chronic pain in children. I know, as my coworkers can attest, children feel pain. Babies feel pain. Whether born 2 weeks after their due date or 4 months before, they all can feel pain. How they express it and how they cope with it is what varies. A premature infant may only need to be swaddled to cope, or may need huge doses of pain medicine. The fact is everyone feels pain differently and everyone copes differently. As adults we assume that when you have pain you are laying there, crying, unwilling to do anything until the pain is managed properly. But what if you had pain everyday of your life? Would you still refuse to do anything until you received pain control? Even if you knew, adequate pain control will never be reached?

This is our experience this past week. Audrey has chronic neuropathic pain. I can't tell you what she feels on a daily basis. I can say that before she was on her current medication her stomach hurt so bad she couldn't touch it. For those that don't know, neuropathic pain is just what it sounds like, pain in the nerves. There may or may not be a reason for it,there often is not a cure for it. Patients learn to "live with it" while trying various pain meds, anti inflammatories and experimental medications like anti-depressants. This chronic neuropathic pain is very common in mitochondrial disease and can be severely debilitating. We are lucky for now as Audrey's medication, an antidepressant, keeps her pain at a level tolerable to her. Again I don't know what that level is or if it would be tolerable to me but whatever it is she rarely mentions it. So when Audrey says she's in pain I listen to her. When she says she's in pain and needs to go to the hospital, we go.  She is not laying there screaming in pain. She is not crying or lethargic. She is restless and she says she hurts. That is enough for me. Audrey has learned to live her life with some degree of pain constantly. This means that if she wants to play with her dolls she will even if it hurts her stomach to sit up. Because her stomach ALWAYS hurts. She has learned she can't wait to feel better to play, she may not feel better. Ever. So when the doctors come in to assess her knowing she is receiving two IV pain medications on top of her normal medications and they see her sitting up playing with her toys but still saying her stomach hurts, believe her. She has learned to cope with more in her 4 short years than most of us will in our life. She has figured out away to deal with how bad she feels everyday but still play and develop as she should. I ask her medical staff to ignore their preconceptions of how she "should" behave when in pain and take her words at face value. This is true not only for Audrey but for anyone who suffers from chronic pain.

Mitochondrial Disease Awareness Week

It's now the end of day 5 of mitochondrial disease awareness week. I thought I would update the blog on Audrey. Looking back I saw my last update was in November of last year! There are 3 saved drafts that I never finished or published. Sometimes its so overwhelming, so discouraging to put into words what is going on in your life. Not my life. My daughter's life. This blog, this week is about my 4 year old daughter. I would do anything to change the fact that she has "a week." She has this awful disease which is given one week once a year for people to hear about it. My friends are tired of hearing about it. It's sad. It's depressing. Half of my friends are with me, actively losing pieces of our children everyday. The other half don't want to talk about it, don't want to know. I wish I had that luxury.

SO here goes. This is what's knew with Audrey...

November of last year Audrey had her PICC line in her arm switched to a central line in her chest. Central lines are inherently more risky as they are fed into major veins and go very close to your heart. Any little wisp of infection can quickly escalate to a life or death situation. Despite this risk, these are considered permanent lines. This means they can last as long as needed, indefinitely really. The surgery and placement went fine. She had a lot of bleeding and bruising to the surprise of her surgeon, but aside from that there were not any complications. And she developed an ileus. If you know anything about bowel motility an ileus is a bad thing. The intestines basically freeze. Everytime Audrey is put under general anesthesia, she is at risk for developing an ileus. When she wakes up it can take days or weeks for her intestines to wake up. In this case it was weeks though really she's never been the same since. She went into the hospital on her same 17mls/hr of feeds that she had been on since May, and left with no feeds at all. Since that time we have struggled to get her to tolerate anything.

In December, we had the life or death experience with Audrey that we feared most with her central line. Within 3 hours Audrey went from tired but happy and playing to being unresponsive in the emergency room requiring massive amounts of fluids to stabilize her. Though her blood cultures never confirmed anything, that is an experience that I will never forget. I stood in that emergency room by myself, watching as doctors and nurses surrounded my little 3 year old who wouldn't wake up at all. They had bags of IV fluids hanging in pressure bags and oxygen and the ICU physicians were there to help manage her. It was a few more rough days but after tons and tons of fluid and strong antibiotics, she was finally sent home doing much better.

We had some down time after that. Her fluid that she received everyday was adjusted and she seemed to do ok. Except her feeding. While we occasionally were able to get her back up to her 17mls, it never lasted long. And so, this year has been dominated by feeding intolerance. We've gone from seeing her GI doctor every 3 months to every 2 months and now every month. Audrey's been in the hospital every month except January and June. 10 months out of the last 12 months she has spent in the hospital. As of today, Audrey has been off feeds for 8 weeks. She is completely, 100% reliant on the IV nutrition that she receives through her central line. If anyone knows anything about TPN you know this is not a good situation. Many people see her and think she looks great. She is very tall for her age. She has gained over 30lbs in the last year. This is not a good weight though. She is retaining fluid not only in her face and her tissues but in the lining of her intestines. The TPN is slowly but surely taking its toll on her liver. You see, all of that dextrose and vitamins which go directly in her bloodstream, go directly into her liver to be processed and broken down. Livers aren't made to do this day in and day out. Livers like to make bile to breakdown food in your intestines and then receive the nutrients after they've been processed. To say Audrey's liver is unhappy would be putting it mildly. This is a dangerous game. Liver failure can come quickly and severely. Everyday that Audrey lives without feeding in her intestines is another strike against her liver. This makes feeding Audrey a number one priority.

Along with her GI dysmotility, Audrey has developed a neurogenic bladder. The same nerves to go to the intestines and regulate proper movement there, also go the the bladder to regulate proper retention and drainage. Due to this dysmotility Audrey now requires intermittent catheterization. Every 4 hours we have to help her bladder empty to prevent infections and damage to her kidneys. This was very traumatic for her at the beginning, but like everything else, she has adjusted quickly and realizes it as part of her life. That calm acceptance is almost as hard for me to see as the kicking, screaming fight.

Earlier this year we were finally able to get Audrey's genetic testing completed. Last year she had her muscle biopsy which confirmed her mitochondrial disease. It showed she had NADH cytochrome C reductase deficiency. But it didn't answer why. Why does Audrey have this major defect in her respiratory chain? So we took a saliva sample from Audrey (which was not nearly as easy as it should have been) and the doctors looked at the DNA of her mitochondria and of the nucleus of her cells. In May we learned Audrey has 3 genetic mutations in the nucleus which are causing her mitochondrial disease. The problem is that this testing and these results are so new, that no one really knows what to do with this information. Yes they can tell that these 3 mutations are likely significant to Audrey, but they can't really say what will happen, how to treat it or even how they interact with each other. Only time and more testing and more research will give us these answers. But with these results Audrey's geneticist took a gamble. He read one research study which had some positive results with extreme treatment of one of Audrey's mutations. With that he decided to give it a try on his patients with this mutation. And that is how Audrey has ended up on N-Aceytlcysteine or NAC for short. NAC has been used for many years in different situations. Most well known in medical world for treatment of tylenol overdose and inhaled for cystic fibrosis, in Audrey NAC works as a super antioxidant that helps rid her mitochondria of the free radicals which cause premature cell death. The initial oral trial went well. Audrey had more energy than she'd had in over a year. Soon though it became obvious with NAC on board Audrey's cells worked but NAC has a short half life so as soon as it was wearing off ( about 2 hours) her glucose would plummet and we were hard pressed to be able to get it back up without giving more NAC. The decision was made to put Audrey on IV NAC. She's the first patient, in the world as far as we know, to be sent home on IV NAC for a long term treatment. We don't know what this drug will do to her long term. We don't know if the benefits of stable glucose and increased energy will be worth the risks of whatever maybe happening with the long term use. We hope that long term will preven the inevitable damage and progression that happens in mitochondrial disease. We even hope that it may reverse some of the damage done. The medical books are literally being written each day that my daughter lives. So far so good. We don't have any symptoms that we can attribute to NAC though only time will tell. 

This leads me to Audrey's doctors. Without these amazing people my daughter would not be here today. From her pediatrician who pushed with me when we knew something was wrong with Audrey though none of the tests showed what. Who is there for me, anytime that I need her, day or night, week day or weekend. Who has admitted Audrey to the hospital twice while on vacation. Who listens to me complain and understands when I cry and who makes Audrey happy with her pretty jewelry and gentle but through ways. We love and appreciate Dr. G more than she could ever know.

Audrey's geneticist Dr. B. He has taken a chance with her. He has tried new and novel therapies on a hunch and a few laboratory studies. He is willing to take a chance and think out of the box because he knows mitochondrial disease is round and will never fit in the square box. He knew what was wrong with her before we had the tests to prove it. He knew from day one what we were dealing with and he has tried tirelessly to minimize her symptoms and slow her disease progression.

And finally Dr. B, Audrey's GI doctor. He is the newest member to Audrey's team, only coming on last November, but at this point he is the key player. Dr. B has been working with me, communicating by phone and email and managing her numerous admissions all to try to avoid the damage that is slowly happening. He is working desperately to help save our mito children. He manages Audrey's IV fluids and line and feedings. He works so hard to manage the extreme GI symptoms of a disease that is not in her GI tract. For all of his hard work Audrey's disease is not one of gastroenterology, but one on the cellular level. This means that no matter how hard he tries, he will never be able to fix her system. This does not stop him from trying his hardest to help her body function to the best of it's ability, to minimize the side effects that the treatment is having on her. Dr. B gets to see me at my worst, my most frustrated, my most discouraged. Despite that all, he remains a kind and caring doctor who we have been very lucky to have on Audrey's team.

Audrey has many other doctors including her kind and compassionate pulmonologist who has supported Audrey's lung and oxygen needs when once again she shouldn't have any. She see's cardiology and ENT and orthopedics and the list goes on and is every expanding She has worked with many teams of doctors inpatient who strive to manage and understand this enormous disease in the space of a few days. Who try so hard to grasp what goes on in her body day to day which is not mentioned or described in any medical book. These doctors, together, are keeping Audrey alive and growing and for that I will forever be grateful to them.

So this is where we are with my girl. Nearly a year after my last blog, Audrey is continuing to battle against the progression of her mitochondrial disease. She is fighting for her life everyday. She is supported by a team of amazing doctors who are willing to think outside the box and try novel therapies in hopes of saving Audrey and the many other children like her. I can only hope and pray everyday that one day, one therapy, one medication will be the key, will turn her life around so she can stop fighting and start living.  

This is me trying to collect 1ml of saliva for Audrey's genetic test. Next time we'll just draw blood :)

  

My Video 9/15/13 at OneTrueMedia.com

Here is our mito awareness week video!

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4 years

Tonight I tucked my 3 year old in for bed for the last time. Tomorrow night, when she closes her pretty eyes, she will be 4 years old. For all mothers, seeing their children grow is met with mixed blessings. We are excited to see them learn and develop but sad to lose our baby. This is even more so for a mother of a chronically ill child. Each birthday we celebrate as a success, a battle of will, determination and medical progress which has given her another year of life. But each birthday also reminds me of all that she has lost and the things that can't be done. This year is a perfect example as I planned a party for her for the first time since she was a year old. This year Audrey has looked forward to her birthday unlike all the others. So we bravely set a date which is the big unknown when you live half your life in the hospital. Sure enough we have spent the past week inpatient. While we are out before the day of her party, this admission has left her tired and weak. Our house is a mess from the 3 deliveries of supplies which came during her stay. I am emotionally drained. This is her 6th admission in the past 8 months. The only months she was not inpatient was February and June though both of those months had procedures and appointments in the hospital. So I have rescheduled her birthday party. I hope by next week I can pull everything together, including myslef, and give her the party I have been planning for the past few months.

 Tomorrow, we will be going to Disneyland. Yes I just said she is tired and weak and yes it has been over 90 degrees with probably as much humidity, but this is what she wants and I cannot find it inside me to keep denying her the ability to live like any other 4 year old. So tonight I'm packing. A day spent at disneyland is a big undertaking for her and the weather only complicates it further. She has medications due every 6 hours, some are refridgerated and some are not. She has oxygen tanks to be packed and cooling vests with extra ice packs. Every night at 7pm I change her IV fluid. She has one bag which contains all of her nutrition (TPN) and one bag that has continuous medication, once again one is refridgerated and one is room temperature. Room temperature is not 90 degrees. That means I will need to plan where I am at at 7pm. In all likelyhood we will not still be at Disneyland since that is a very long day, but we cannot be sitting on the 5 freeway in traffic either. I will also need to bring extra IV fluids. Dehydration can happen suddenly and severely in mito kids and Audrey is at high risk right now with her new medication regimen. I have a feeling we will be saying hello to Disney's wonderful first aid staff once again. But all this is worth it. I will gladly do all this and a thousand more tasks to make her happy. To let her have a day that isn't about hospitals and doctors and medications. My birthday present for my sweet girl, is for a year of doing all the things her 4 year old self wants to do. I would like a year where I can schedule doctors appointments around her school and activity schedule instead of the other way around. A year when she thanks me at night for going to Disneyland instead of going to the hospital. A year when she doesn't learn about her body through invasive tests and procedures but through growing and exploring like any other child. I want my daughter to have one year as a normal child as she hasn't had since she was a year old.