Saturday, February 22, 2014


Please watch the trailer for this important work. Donate if you can. Then share it with everyone, everywhere.

I started this blog because I wanted answers but did not have them. I hoped to find them. Thought they had to be just on the horizon. Days passed. Weeks. Months. And years. Today I am still there at the beginning.

We still don't know.

I started this blog because I felt so alone. I hoped to find others who could relate. Thought they had to be searching, too. That maybe we would find each other then find our answers together.

Today I still hope for answers, and though we still don't know I have found that there are good people who are using their amazing talent, giving their time, and even sacrificing their own resources to bring the undiagnosed from the darkness. To bring to light the challenges of searching for answers. Creating a film to "make a difference... in how medicine is practiced now and in the future."

My thanks goes out to Dr. Katia Moritz, Nicholas Miller, Crystal Shearman, and Dr. Jonathan H. Hoffman for such amazing work! Please consider contributing to help complete this film. I know their efforts have already blessed many lives, and I just can't wait to see how far this film will go in making all the difference for families like ours.

Tuesday, July 12, 2011

We Can't Go Back - Let's Go 4ward!

About this time last year, I committed to co-chair Utah's first Energy for Life walk. I was inspired mainly by seeing that North Carolina was doing a walk, and as I watched updates about Team Saving Savannah on one of our mito mates' blog, I wanted to do something here to make a difference. I focused first on having our state legislature pass an official resolution designating the first full week of September as Mitochondrial Disease Awareness week. Then we got started on the crowing event of that week.

Last week we had our kick-off party. Our state did not even have a UMDF group last year, so it was hard to know what to expect. But it was amazing as families from our community came together, all affected by mitochondrial disease. Some of us have buried children from this disease. Some of us are caring for children, or are affected ourselves. It was just a touching experience to meet people we had never seen before but felt so much like we already knew each other. I was sad knowing that the reason some weren't there was because their child was in the hospital again.

The blog that inspired me to get started with all this in our state just recently posted about Savannah's upcoming 3rd birthday. She included many pictures of people affected by mito, including Dominic and Bridget and two of our other kids. We are all working to raise more funding for UMDF. Will you consider making a donation?

Our family started a team, and I will say it was an emotional thing for me finding a suitable team name. We have two children who died. And others of us are being evaluated for possible mito. If you've read much of my blog, you'll know we still aren't sure exactly if we have mito in our family. But that is the biggest thing that keeps coming back as we rule other things out, and tests point in that direction. So I needed a team name that could help to remember Dominic and Bridget, and also include all of us. Our name isn't as cute and concise, but we ended up with 4 Dominic, 4 Bridget, 4 Us, 4EVER.

Dominic is our 4th child. Bridget is our 4th daughter. On Monday, it will be 4 years since Bridget's birth. I know I don't have a lot of blog readers, but I'm hoping to have at least 4 of you go to our team and donate $4. It's 4 those who have already succumbed to mito, and 4 those who are now coping with this disease in their lives. It's 4 the future so that we have better testing, better treatments, and eventually 4 the cure.

Friday, July 8, 2011

Birthday Wishes

I hesitate to post, because this information is not on the blog yet, but Eithene celebrated her fifth birthday early because mitochondrial disease was progressing so quickly. Today she took her last breath. My heart aches for her family. Even in faith, it is difficult to send your little one off into the eternities while we are held back in mortality. I do not understand these things at all. I do not understand why children suffer or die. Prayers go out to her family.

Nearly four years ago, we welcomed our 7th child into our home. Bridget was born a little early, and spent 10 days in the NICU before we brought her home. She continued to have difficulties at home, but we weren't sure if that was normal due to her prematurity. We were very worried about her, and especially because the difficulties she had resembled what we had seen with Dominic. And then she had the same crisis event, and died just like Dominic. On July 18th, Bridget would be turning four.

We never have had a birthday party for her, although we'd already been planning her first birthday. I was trying to take a picture every day to create a slideshow for her big bash to show all who came to celebrate how quickly she grew and changed. I am so grateful for my diligence in taking pictures, although I did miss a couple of days, and we didn't get to use them for the reason I'd taken them.

So Bridget's birthday is soon! She'd be turning 4. I want to have a celebration of sorts for her life. A way to honor that her life, though brief, had a purpose and that she continues to have an influence here, she is still very much loved, and she lives (though we are separated by time).

We believe Bridget died from mitochondrial disease, but must wait for improved testing for a genetic cause of death. Would you donate $4 for her 4th bday to help our 4 Dominic, 4 Bridget, 4 Us, 4EVER Energy for Life Utah team raise funds for research to give us more understanding? If you'd like to donate just click a team member's name on the site, then click the "Donate" button on the right hand side of that page.

All of the money donated goes to the United Mitochondrial Disease Foundation. This organization has funded more mito research than any other organization outside of the government. They are a non-profit 501(c)(3).

We have had a whole lot of appointments with specialists lately. There is a whole lot more coming. And I am not ready to update on all of it. More and more, though, it seems important that we have better testing, effective treatments, and more understanding about mitochondrial disease. I hope that if you are able to help us in this way that you will be part of Bridget's birthday
celebration this year.


Monday, June 13, 2011

How Many Roads

The blood gas that we did was absolutely normal. I love that the doctor calls directly. It's nice there are still doctors, a specialist even, who takes time to talk to the family directly, and not only when it's bad news. An absolutely normal test result, and she took the time to call to let us know! She hasn't gotten the holter monitor results (we were too late on Saturday getting to UPS, so it just got shipped back this morning), and she'll keep watching for that and let us know.

I am actually happy this time for a normal result. I think sometimes I wish for abnormal results because it will help us better know what the problem is. But this test wouldn't really tell us what was causing a problem, just that there was a problem. So it's good that we don't have this as a problem.

I read the news about Edison Pharmaceuticals EPI-743 getting Orphan Drug Designation, which expands access to this medication which has shown promising results to kids with Leigh's disease. Leigh's or Leigh-like disease is what Bridget's autopsy shows as a diagnosis. We have not done enough genetic testing to know if the known disease causing genes are in our family. But this study has me wondering if we should do more genetic testing.

Dominic and Bridget had sudden crisis events after weeks of seemingly mild symptoms. Apparently, this is not an uncommon presentation for Leigh's. The other kids we're most worried about have very similar symptoms to what Bridget and Dominic had. I mostly find reassurance when we look at other blogs about kids with mitochondrial disease because our kids aren't that sick. But as soon as I think about how not that sick Dominic and Bridget were, I don't feel so reassured. I try to reassure myself because Dominic and Bridget were infants when they died, and our youngest is now 3 years old.

I can't say how many roads I've been down trying to find the answers for our family. It's been about a decade now without really any progress. I read things like this then go searching through the gene testing we have done to see if I can understand it and if it relates at all to our family's results. I don't even know what fulminant means, and I will probably go look it up to find out, but may not remember next week when I read another study with the word. I used to be able to keep all the medical terminology in my mind and recall it, but with so many years and so much reading it all just blurs together now.

I am going to try to learn more about Leigh's disease. I am told perhaps even my older children are susceptible to a sudden event like Dominic and Bridget had, even though their symptoms are not as severe as kids with mito on so many of the blogs I read, and even though my kids are getting older now. I just want to see if there's enough going on to really look at the genes that the EPI-743 study recognizes as causing Leigh's so that if those genes are in my family, we can have the best chance at keeping everyone as healthy as possible.

But really, normal results just are the best kind. I will be very grateful if we can get to the end of all the questions and end up with an answer that explains Dominic and Bridget's deaths while removing concern that we're more susceptible because of genetics. I don't want to lose any more children, or maybe grandchildren. It's very painful to bury children. I am still struggling very much with this heartbreak. Tonight, I am grateful for normal.

Friday, June 10, 2011

A Few Things

Yesterday we went to neurology with the two youngest living kids. Generally, their appointments were normal neurological exams. There was some weakness noted and some question about seizure activity. So we're going to do an EEG on our youngest, and an EMG on our youngest son. We'll also take our youngest son to a special care developmental pediatrician. It is to look at the autistic qualities he displays, but also to look at the feeding issues, lower energy, gross motor skills, etc.

I did ask if we're dealing with a mental illness (one of the findings from the mtDNA test we had noted that it could be related to mental illness) because some of the things we're seeing with our kids really worries us. We were told that some kids with mito do some really strange things, and they didn't feel we needed to be thinking there's a mental illness. It's confusing to me hearing answers like that, because I am not sure if they are saying they believe our kids have mito or if they are saying that if it is mito that the strange behaviors/episodes are connected to that (but then what is going on if it is not mito). Mitochondrial myopathy just kept getting tossed around, though. I think it's just that there isn't anything else really sticking out, and it is something that is a legitimate possibility.

We went to the lab to do the blood draw the pulmonologist wanted. Neurology had no other labs to add. It was just a capillary blood gas, so I thought that was better than going to a vein. But it really upset our little one more, because they have to push and push and push. She cried a lot, and the really sad kind of cry like why am I letting them do this. She had to leave her bandaid on, and wouldn't let us even touch her hand all day.

Next, we stopped in at cardiology. They had the holter monitor ready, and got it put on. She's wearing it now, and we will keep it on until tomorrow to return it. There has been some different discussions about dysautonomia, so hopefully this can tell us if that's a problem. Neurology told us that Vanderbilt is doing a lot of research studies in that area. They told us that if the holter monitor showed dysautonomia, we might consider going somewhere like that where they are able to do the really specific testing. But if the holter monitor is normal it doesn't really give us any more information. So am I supposed to want a normal or abnormal result?

It was interesting at the appointment. I think doctors try, but it's just frustrating not having anything to really pin down and see what is going on. They didn't have an answer for the way our youngest's head is growing. They asked if our genetics doc had any suggestions. That is how it goes. Neurology told us that our biggest concerns about our youngest son need the GI (yeah, doing that) and when we were at GI, he made it seem it was a neurological thing (like autism or sensory) or a behavioral thing. They all just ask what the other docs think, as if it's not their job to think about it.

The whole genetics discussion was interesting, too. Of course, the same thing was said about how the testing is going to be coming out soon, but not really fully available yet. They pointed out how the features of these two are so similar - and there are a lot of similarities (but some distinct differences I think perhaps were overlooked). I asked a little about what it means about the similarities, and the idea is just that they both seem to have the same underlying component from the genetic aspect. If my memory is right, the way we look can be a phenotype, but so far there is no genetic condition that these features have brought to mind yet. A far-stretch that was mentioned was Russell Silver syndrome, but no one really thinks that is what it is.

Well, anyway, I hadn't gotten my hopes up too much. They did explain that though some of the tests from a couple of years ago like the MRI and MRs and EEG had things that were "interesting findings" that in an overall view they were "normal." So the confusion we have with some docs saying they're normal while others say abnormal all have to do with how fussy the doc is about the results, I guess. I don't know how to interpret things myself, so I am just trying to assume no one is overlooking things by not being fussy enough.

Today, we tried to just take things easy. Yesterday was exhausting in so many ways. Going to the hospital where our children died, seeing the docs that were part of the care of those children during the crisis...

Okay, well the happy thing is that we are celebrating a birthday! Today we just tried to enjoy that though we were very uncertain if we'd have the chance to even celebrate one birthday with her, she is still here to celebrate! Honestly, it's not something we take for granted. I am just very grateful, and if I was the one who got to pick her birthday wish today, it would be that she would have decades more full of birthday celebrations.

There is another little girl I wish I could give those decades to as well. But her parents are going to be celebrating her 5th birthday early, because she likely isn't going to live long enough to be here with her family on that special day. You can send a card to her and her family:

Cards and flowers can be sent to:
Eithene Hilliard
Children's Hospital Boston
300 Longwood Ave
Boston, MA 02115

Sunday, May 29, 2011

Just Me

I had two people message me about my last post. It wasn't meant to be directed at anyone. It wasn't meant to confuse. I really feel bad if it caused any concern.

It is all just me. Just trying to figure things out. That's why I started the blog, because we don't have a definite diagnosis to explain why two of my children have died, or whether or not that has anything to do with the variety of quirks the rest of us deal with. Mitochondrial Disease keeps being what is given as a good possibility. Lots of other things have been ruled out. But we still don't know.

A couple of weeks ago, I was able to meet with Chuck Mohan of UMDF. I introduced myself as someone who is still unsure whether mito has affected our family. I explained a little background, and expressed interest in wanting more research for the selfish reason of having a way to better be able to either definitively confirm, or absolutely rule out, mitochondrial disease in our family. He addressed the introduction, and noted how so few families with a clinical diagnosis will have the molecular/genetic key. He was quick to point out that his experience personally, and with UMDF, was that those who have that are the minority.

Part of me accepts that mito is a really likely diagnosis for our family. But I also think that the symptoms I have myself, and even that the kids have, are far too mild to really be mito. In discussions we've had hypothesizing about inheritance for our family, it is suggested it would be autosomal recessive. This would explain why Dominic and Bridget were so young when they died, and why the onset was sudden. But even when I read of other kids with this inheritance who also died as infants, it seems they were so sick that they were hospitalized or at least having a variety of testing to help figure things out before they died. Both Dominic and Bridget had more of the mild problems we are seeing in our family right now. Nothing that really got a whole lot of flags raised. And even after their deaths - and extensive testing and autopsies - there still is no clear constellation for what happened.

For others who have a more clear idea, even without the genetic evidence, there is certainly going to be a more clear answer to whether or not medical interventions are necessary. For my family, we are really gambling. If we assume there is an underlying potentially life-threatening condition, and we choose to aggressively react to things, we have the risk of getting tangled in medical interventions that even if we had a sure diagnosis may be too imposing. And with or without a diagnosis, there seems to be prudence in looking at each individual circumstance and making a decision on what is going on now - not what we think is going to happen later.

My husband and I disagree a lot. When it was strongly recommended that our youngest have a G-tube placed, I didn't like the idea but also felt it could be helpful. My husband was 100% (really 150%) opposed! He didn't think she needed it at all and that it was just insane that it was being suggested. Of course, since I had some reluctance and he was completely unwilling to consider it, we didn't place the G-tube. And now about a year later, hindsight is that he was probably right. She didn't really need it. She has gained about eight pounds this year. She's also grown a few inches.

So it is hard for me to stay in the present, when the past teaches us both that we were not aggressive enough and maybe too aggressive, at least potentially, also - and there is the future of consequences to think about. If we choose poorly, our children will suffer. And we have the responsibility to do the best for our children.

Grief makes you second guess so much, because you wanted to do the best for your children all along. So why did my son die? And then why, WHY would my little girl die six years later? I have vivid memories that haunt me, fighting in a care meeting about Bridget's hospitalization and whether it was appropriate for her to go home or not. We had already gotten discharge papers from the doctor, but the nurses would not sign off on them from the hospital side. I was livid. I was sick of that place, and felt like she should be home with me. The natural side of me felt the hospital environment was just making her worse and at home she would have a more peaceful environment to help nurture her growth and development. I distinctly, clearly remember my tearful declaration: "I've already buried one child! I'm NOT going to let Bridget die!" Somehow, I was convinced that because I had been through it with Dominic, that I would know what to do and when to do it if Bridget needed anything. So why did I miss it (whatever it is)? Why didn't I get her the help she needed before she went into that crisis event that led to her death?

The reality is, I didn't know and I don't know the best way to make sure that we are doing what we need to in order to help our kids be the most healthy. I don't know if the decisions we made then added to whatever it is that took our kids' lives. If we had done things differently, would they have still died? Would they have died sooner or later? Would they be healthy, or have suffered from whatever it is that took them? I am unsure if what the kids who are still living are experiencing have any consequence to their long-term health, or if it's just a temporary difficulty that we can address and then get on with a more healthy future. I don't know if my symptoms are stress-induced or from a true underlying physiological condition. I really don't know.

What I do know is that it isn't good to have some of what is going on happening. Whether or not it is from a bigger condition or it is just its own little isolated problem, it needs to be addressed. And I know I'm really trying my best to look at all sorts of possibilities for the best way to respond. I have an internal struggle between feeling like I'm rushing to the doctor for every little sniffle, or over-reacting because of my fears - and on the other hand, feeling like I'm avoiding it and distancing myself into denial so that I don't have to face any likelihood of another scary answer being given. I vacillate through cycles of wanting to do every test and try every treatment even if we don't have a diagnosis and wanting to have absolutely nothing at all to do with doctors and the medical community ever again.

So my posts are just my way of working through all these feelings along with the current place we are with things. It isn't meant to be a judgment about how others address their situations, or don't or didn't. I don't have bad feelings toward anyone who has given me advice one way or another - and actually, I very much appreciate others being willing to give me suggestions, insights, and advice. So I just wanted to clarify because I don't want others to misunderstand. It is difficult for anyone, whether diagnosed with mito or not, to know - absolutely know - what to do. And so I hope that others understand a little better where I'm coming from.

Friday, May 27, 2011

This, That and Whatever It Is

As far as doctor visits go, pulmonology was a great visit. We discontinued the oxygen compressor at night, so I've called to have them come and pick that up. I was surprised when my husband asked what we would do if we needed it again. He was always critical of having it in the first place, and even questioned a few times if we even needed it, so I was surprised by the question, but the doc just said she could order it and have it sent out immediately if it came to that point again. So I am very excited to not need to worry about this. Honestly, I haven't been worried about it for a few months, anyway. But I was worried that the doctor would disapprove. I don't know why that concerned me, but it did, so it was a relief to feel like my feelings were consistent with the doctor's.

I just have to say this doctor is the doctor that gives me hope at all in the medical community. Completely opposite of how I felt leaving the last appointment with GI, I felt like this doctor not only took the time to listen to my concerns and thoughts, but also had taken time to review records, and made observations of her own. It was nice to feel like there really is a doctor who cares, even though she also tells us that there isn't anything to clearly tell us what is going on.

Even though we didn't feel we needed the oxygen anymore, we have been very concerned about shallow breathing episodes. Both Dominic and Bridget would breathe weird like this. And it has really freaked me out, to be honest. But we never had the pulse oximeter with Dominic or Bridget. We have with our youngest, so we were able to see that even if she was breathing very shallow, she would keep her sats up. They would drop from her normal, but only a couple of percentage and still typically in the 90s. So though it freaks me out, I was okay to wait to talk with the pulmonologist about this.

Another thing that is new is since the end of February, she has just had a constant cough. It mostly gets worse at night. It was really bad for about a month and half, but the last month and half it is improved. But still there every day, and still will wake her some at night. It is a raspy kind of cough. She hasn't been ill. But she has had more audible reflux, and I believe that is what has caused the cough. We have an older child who had this same cycle start (although she was a little younger when it started). We didn't know what was going on, and it took about a year and half to finally figure out it was reactive airway disease - by this point quite progressed. So I was worried about what to do to make sure it doesn't get that bad with our youngest.

We talked a lot about many other concerns, not directly related to the respiratory questions. We looked back at some previous testing. Then we got a plan. The doc increased her dose of prevacid, and we'll see if that will help improve the cough problem. The shallow breathing was a concern. She said typically it is something she'll see if someone has lung disease, and we are not concerned that we're dealing with lung disease. Even if we were, the shallow breathing is intermittent, unpredictable as to when it will occur (lung disease would mean it would be constant). The doc said that she does see the funky breathing stuff with Leigh's encephalopathy.

Now, it surprised me to hear her say that. We still do not know if mito is part of our family picture, but Bridget's autopsy lists a diagnosis of Leigh's or Leigh-like syndrome, based on brain pathology. I don't understand if our youngest could have the same thing or not, because she is doing pretty good overall - but has these quirks.

But we have an appointment with neurology next month. So the pulmonologist feels he will likely want to do a repeat EEG. And if so, he may also combine it with a sleep study. The pulm wants to do a blood gas to see if the shallow breathing is resulting in CO2 problems (I don't really understand this, just trying to remember what the doc said). So if neurology wants to do labs, we can do it with those labs. Otherwise, she gave us the order to have that run.

She also wondered about Dysautonomia. When we were there, she asked us if we had noticed what she was observing with her pupils not dilating. Actually, we have and it is even more pronounced in her brother we are worried about. We thought it was weird, but the kids don't seem to be bothered by it. Anyway, I think that is when she also talked about Dysautonomia. Well, I had listened to a lecture by Dr. Boles about this topic and how it relates to mito. And after listening, I felt it was amazing how it seemed to hit on a lot of the struggles our family has. Well, she feels it would be a good idea to do a holter monitor for 48hours. She thinks that perhaps the shallow breathing or some of the other things could be explained by that test, so we're going to do that. She'll have to order it, but we just do it at home and send it back.

I just really do like this doctor. I like that she's cautious, and tries to avoid tests if they are unnecessary. I like her insights about how some tests aren't even as helpful because just the testing itself is a physiological stress, so it makes the results unreliable sometimes. I like that she is okay with my reluctance to be too invasive. But she also really took the time to look at the whole picture - not just the respiratory issues - and observe, and look through records, and help on the individual level instead of being prepared with a pre-printed planned protocol. She seems to be thorough enough that even with my reluctance to do too much, that we aren't really overlooking important things, either.

So pulmonology was a good one.

A follow-up on GI:
We did do the whole flush out. Things went through, so I guess it was successful in that way. But we have had a few vomiting episodes since, poor appetite is still the same, and we are still needing to use the miralax. We increased to a whole capful instead of 1/2, and that seems to be working better. I don't see any improvement, and I am no less concerned about my son now than I was before going to GI. We will be going back in about five weeks, and I hope this time there will be less frustration and more insight on how to help.

Now some introspection:
I have had some real moments of clarity lately about how much I wish I didn't have kids who had struggles, and so sometimes I just go on with life as if nothing is wrong. But there are things that are presenting that just make it clear that whether I like it or not, there is something different about my kids. I hope nothing life-threatening. But we still don't know what is underlying. And that part scares me too much.

I think my biggest struggle right now is trying to determine how much or how little to do for my kids medically. I don't want to overlook things and push them to do more than they should do, and have it impact their health negatively. But I also don't want to assume they have a condition that we would find out later they do not, and therefore hinder their progress with restrictions that were unnecessary.

I fear most the regret of not doing enough, and having them die. I have buried two children! I can't express the heartache of this! But I keep telling myself that there is also a terrible regret in not letting them live! So what do I do?

When I got a call today from the metabolic clinic, I was surprised. It was to ask if our information could be shared with another family in the area who wanted to do a fundraiser for mitochondrial disease. Well, it made me wonder. This clinic has not given us a definite diagnosis of mito, but it keeps coming back to that as the explanation for our kids' deaths and even as the underlying reason for the current health struggles in our family. In a way, having them call me to ask this made me feel like they had put us in the "mito community." It felt like I was given permission to accept this as the diagnosis. And yet, in the "mito community" I feel like people think we are imposing - that we don't know what it's really like to have a kid with mito, and we don't really have a diagnosis, and we somehow just want to intrude on their territory for whatever sick reason someone would actually want to be in that community.

I also feel that way generally, with the medical community. They don't know what it is for sure, and our kids who died were infants while the rest of us are older, and none of us have seemingly urgent medical concerns. So as I've noted before, it might be mito, but it might be nothing. Nothing of serious consequence, that is, because there is something. And maybe it is mito for the kids who died, but an unfortunate mix of all sorts of other health issues for the rest of us.

There are other moms who have kids with a confirmed diagnosis, and they tell me to just accept that Dominic and Bridget died from Leigh's and have everyone involved in the care of our family plan our medical care based on the diagnosis of mito. But I have a problem doing that because you can't just give yourself a diagnosis. That's why the doctors go to medical school so that they get the final say. And you can believe what is wrong is this, but find out later it was that - and that treatment would be very much different than this. I am just cautious.

I am also one who has been very invested in natural. This sounds weird. I really appreciate modern medicine, and I am not wholistic exactly. I just am not sure I like the idea of rushing into medical "interventions." It seems to me, one "intervention" leads to another and leads to another.... until you have handed over your health to reliance on medical interventions.

I hear about some kids whose health is very similar to what mine was as a child, and the recommendations doctors are giving now in response to the situation. I wonder how I would feel if my mother had taken advice like that and put me through some of what parents are doing for their child because they are also scared like I am. Somehow, without all the medical technologies, I grew up despite having whatever it is that caused all that and is progressively causing much more. I can't say if my life would be improved or worse if my mom had had access to the kind of options we have access to now. I just feel more reluctant to run to the medical answers - or cynically, the protocol - when I have more trust in my own body to adapt or adjust somehow, than I have trust in people who simply are there because they went to medical school. It seems odd to me that strangers, people who see you for an hour at a time, here and there, but not constantly - that these strangers are trusted more than we trust our own selves.

Trust is hard for me. Because I tried trusting myself, and had two kids die. I tried trusting doctors and had two kids die. I also have six living kids, and I'm still alive. And somehow I really deep down believe that we are all just human. Death is natural. Not necessarily, in my very unhumble opinion, death of children, but truly it is just a reality that as miraculous as life is, it is also finite. As much as I wish I could have answers, I am not getting them. And as much as I want to trust myself or doctors, we have all failed. So the best I can do is just work from where we are.

Hopefully, I can find a place where I feel there is support through this struggle. Whatever the diagnosis or medical plan, whatever the ultimate outcome. I just hope to find a place where I am not marginalized for trying to do the best I know how for our kids, work through as I still grieve for the deaths of my children, and find a way to focus with all that my own mind and body are struggling with also.

And now I'll end my typical long ramble.