Tag: Mito Sucks

a little of this a little of that

Well we have had a few things go on the past week and all are completely different so I hope this post is appropriately titled.

Cardiologist Follow-up

Daphne had her follow-up with the Cardiologist and for the first time I did not go.

Rich and I agreed to take some appointments off here and there that are not critical and just follow-up, not like the ones discussing her day to day care but those listed as precautionary and we just have to follow the plan.

If I can say her Cardiologist was just that, not critical and planned follow-up, it was, so Rich took this one. He did not see the need for even the follow-up but we complie.

He did want to get the PFO diagnosis removed from her chart, since she did not have it.

Well due to a signing tech the tests were completed rather easily but Rich learned that Daphne did have PFO (Patent Foramen Ovale) a hole in the heart that didn’t close the way it should after birth. This is common and usually closes by 1 and most go untreated but GEESH…they are lucky it’s closed and not a problem because we asked several times during her first visit if anything was discovered or out of the norm and anything we should watch for and were told all was good. 

I tell yeah, apparently we have to define anything next time. 

Enzo

Adelaide got her very first pet. A funny little 1 ish year old boy.  I sold some of her clothes and shoes that she and I purged which gave her the money to pay for his adoption fee. 

He is a good and sweet cat but when scared (to me only at this point) uses his very large teeth and makes it known. The first time ok the dog scared him and the second well I did it, part of my desensitizing training that I believe every animal should have to be good with kids….maybe he needs a few more days at home first. 

He can get some rest while my antibiotics kick in and I arm myself with oven mitts the next time.

Enzo 2 Me 0

Game on little buddy, I will win, because there is only one way to live in my house and that’s by my rules 😼!


Maude

We received a gift certificate to a very unique restaurant just 2 years old now in LA from Rich’s mom last year for Christmas.

I am a foodie junkie, well pre baby I was and now I struggle just to cook anything, my brain has not turned back on yet. 

I wish I had the time to watch the cooking shows I used to then I wish I had the energy to cook this dishes I love.

It’s sad these days.

Anyhow this is Curtis Stone’s new restaurant named after his grandmother. 

And the staff is beyond attentive, Rich said “I think there are more wait staff then guests” well at this quaint 6 table restaurant there probably were but never did they hover or never were they not there when you needed them. They were a well oiled machine.  The chef genius (not Curtis) but Justin, served several of our meals, I was just in awe. 

It is something to experience at least once in your life, I didn’t have it on my mental bucket list but I added it and checked it off at the same time.


I mean how gorgeous are those floral plates? 

I told rich, I have always wanted a very old set of antique silverware. I mean this spoon is just beautiful.

I am happy I got a picture of every dish, at first I was doing it because I was asked but then I was obsessed with capturing the beauty of the food and now as I look back I can taste every dish as I look at the pictures. 

He has a new restaurant Gwen and maybe we can go to that or maybe we can find another unique experience to enjoy someday.

Xoxo satisfied Mama

Run of the Mill

So my parents have been here for the weekend…

No lie within 30 minutes being in the house all the dishes and ahem 2 weeks worth of laundry were washed and folded!

Hallelujah!

That was a huge relief, I could have almost thrown in the towel to doing the epoxy in the garage….nah who am I kidding, I love a good project.

Actually Rich and I have spent most of the evenings over the past couple weeks working on the garage after the girls go to sleep until about midnight.  We are tired in the am.

But it looks so much better.

Anyhow I love my convo with my dad before bed is about “run of the mill” doctors. The ones that don’t make an effort to invest any time into their patients.

Ahhh obviously I was complaining about Daphne’s docs who treat her like a hospice patient. Sorry stupid stupid docs. Not my kid and not in my watch. I have no issue challenging them and making them think and making them do the best they can. 

They see tens of patients, not hundreds so they are supposed to be the resident experts bringing all the latest articles to us and knowledge on research, not the other way around.

These people piss me off and they piss my dad off! 

Take the time to read and research, it’s not that hard! 

I am going to say, sorry not sorry for him continuing to fuel my hatred and disappoint in most of the docs I encounter (FYI he’s a doc himself)!

So I can end on a positive note below are some pics from our weekend!

Light up my World

Our friend and neighbor bought a case of green light bulbs and asked the neighbors to change their porch light or shine a lamp in their window in honor of Daphne and Mitochondrial Awareness Week. 

I was absolutely blown away with this gesture and did not think of it myself. 

She said Home Depot will give a “refund” if you buy these to support awareness weeks.

Here are a few of the houses 💚

Some of my favorite moments

Since school has started, so has all of Adelaide’s activities.

Gymnastics 

Art

Soccer

Mid year Cheer

These keep her busy 4 nights a week, 4 hours one evening with a soccer game on Saturdays. 

She absolutely loves her activities and has always excelled at school with perfect grades even with juggling a very busy schedule.

Good parenting? Mama genes? Or just a great and exceptional kid?

Even with our craziness and the above is just Adelaide, Daphne has therapy 4 days a week and Rich and I play soccer one night a week and TRY to take a run or two midweek we still manage to have great family time. 

I will share some of my favorite pictures from the past couple of weeks.

*as you can see even though the news of Daphne’s Disease is horrible and dealing with her day to day life is not always easy and requires lots of planning for both kids we have not stopped living our lives which I think is very important for mental health which I believe is the key driver of your overall health. 

Xoxo

From a mama that earns her glass of wine

Mito Family Social

The Mito Family Social was…

Eye opening

Amazing 

Sad

The families that came have been battling with Mito for much longer than us and are so comfortable in talking about their journey. I admire them immensely for this.

As the first family arrived with a 12 yr old boy in a wheelchair with a vent tube in his throat, I almost lost it.

I ran to the car to get my sunglasses so I did not upset the parents or the child.

The second family had two bouncing boys that did not have any noticeable limitations.

The third attendee was a 33yr old woman who again did not have any noticeable limitations.

The fourth family arrived with another wheelchair bound boy, 7yrs old.

All of the children were wonderful which really helped me keep a positive outlook. 

The 12yr old was a normal boy on the inside but stuck in a body that was failing him. He was chasing Adelaide around, wanting gum, getting fruit chews and not happy about it and acting like he couldn’t hear us.  He could not speak well, had a feeding tube, could not walk well and had other symptoms from the disease.  He was diagnosed at 8years old and prior to was a “normal” boy running around, riding motorcycles and talking freely. His parents are doing an amazing job with this guy, his sense of humor and loves shows in his personality. 

I cannot begin to understand how his parents must feel and how they dealt with the change.

They said he has not asked why they can walk and he cannot. I don’t think I could handle that question if I was them.

The 7yr old is defying all odds as his mother lost his older brother before 1 yr of age to the same disease. This guy is very sweet and nervous around strangers and said to have the mentality of a 9month old, but I saw so much more in him. He can walk with a gait trainer and can unbuckle his seatbelt and take his arms out of his arm straps. His mom is doing an amazing job and he has an older sister who ran around with Adelaide. 

The bouncing boys…such cuties, one has a feeding tube that has worse symptoms than the other and was not diagnosed until he was 4 1/2, he is approx 6-7 now. His little brother has the same disease but milder and no feeding issues. 

This mom was really able to relate on the importance of routine, proper nutrition, rest and staying hydrated. 

The woman was the first person that I have met, that could speak on the disease and how it makes her feel and symptoms she is developing. 

She expressed how exhausted she feels and cannot find the energy to go to the gym. Her hearing is starting to go and she cannot find work due to her limitations with rest needed and she has a teaching degree.

I will not share any photos from the day unless the families say it’s ok.

The mom’s were all shocked to hear Daphne does not have a feeding tube and has not been hospitalized for sickness to date.

I hope I did not just jinx myself and can keep her strong and healthy.

This winter has me terrified though!

Mitochondrial Disease Awareness

Only one week in Sept is Mitochondrial Disease Awareness, this year its the 18th – 24th.

On my Facebook page I am making the awareness for the entire month as the number of people I have encountered are clueless on the disease.

I cannot necessarily fault them as I was the same way so I am going to take this time to educate all that pay attention.

My post today is simple….

What are Mitochondria?

Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.

What is Mitochondrial Disease?

Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.

Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.

Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.

Source: www.umdf.org

Go to

I have been very busy lately and have not even checked the Hypotonia Group I am a member of but amazingly enough when I do there is ALWAYS a post that pertains to a thought or an immediate need I have.

A mom posted about this product and I think it is so clever.

I am can’t wait to get one and try it out.  They have some other really great products on there as well.  I love this as well (so versatile and compact).

I get really irritated when my husband and daughter just lay Daphne down next to them while they do something else like watch TV or read a book.

I keep telling them she needs to be upright to play not laying there like a vegetable.  She needs to be engaged and interacting and learning as much as possible.

Of course just laying her there is easier because she can’t scoot, fall over or require much attention.

Don’t get me wrong there is a time and place for laying flat and floor play to help her rollover and push up with her arms but, not on the couch or the bed.  Those surfaces are too soft for that.

I hope you can share this site with other families that may benefit from this.

XoXo

Desiree

To Gluten or Not to Gluten

We are continuing to search for other ways to treat Daphne and slow/stop the progression of the brain disease caused by her Mito Disease.

Rich has found some articles on supplements and and is reaching out to Neurologists to see if one thought he has holds any basis.

I told him to not get disappointed because most docs are not willing to step outside and have an actual thought on their own or “try” anything not already documented.

I mean are we getting anywhere with Science?!  Some days I wonder.

So we know that Alzheimer’s, Huntington’s, Multiple Sclerosis and Parkinson’s all have Mitochondrial Dysfunction.  All diseases that do not have a cure!

My great-grandmother and one of my grandmothers died of Alzheimer’s.  It is a horrible disease and I remember thinking when I was younger and seeing them both go through this that they are still active and moving and eating and should be fine.

Never ever did I know the impact the Mitochondria has on the body in causing systems to shut down until Daphne.

Now looking back at both of them going through this I wish I had known what I know now, I wish I could have suggested more things.

Let me get to my point…

Today I spoke with a co-worker that was diagnosed with MS 3 years ago.  I wanted her to tell me what worked for her.

She spoke about different doctors she has seen in the US (not as helpful) and Switzerland (helpful stating something is poisoning your body, drink more water)  she agreed that the doc sounded crazy suggesting water but she increased her consumption and she felt better.  Novel idea since our bodies are 80% water but sometimes you think you need to hear it from a doc for it to be true.

Stop that now.

She then discussed Terry Wahls, a doctor who had debilitating MS that went from a wheelchair to standing, and her recommended diet.

It’s basically gluten free, dairy free (aka Paleo).  Oh boy!

She said she switched and follows the beginner diet as the doc has 3 stages and it has helped her.  Her MRI showed the previous lesions on her brain were gone as well as her spine healed after she was on the diet.

She even said she ate spaghetti last night and woke this morning not being able to walk.  But was pushing herself to go for a 10 mile bike ride with coworkers because it would make her feel better.

I googled, researched and found this really interesting you tube video I hope you all will watch.

We have asked about diet and always get the same answer…”it doesn’t matter”

Diet is impactful, let’s look at kids who eat processed food (chicken nuggets, mac and cheese, pizza) vs kids that  eat fruits and veggies.  I know after I eat the processed food how I feel…nasty, overly full and bloated the next day.  You will not say man I am so bloated from that peach or bowl of broccoli.

I know it’s all in moderation and change is hard, but if there is a shred of evidence that this could help, it certainly will not hurt.

I love pasta.  It’s my favorite food.  My body does not like it but I would be willing to try this along with Daphne to see what it is like.

Mito Family Social

Rich and I will be hosting a Family Social for those with Mitochondrial Disease.

This is going to be hard to meet other families, face to face, who are going through this.

Right now we don’t know anyone else.  I have talked to some families online but this is going to be in PERSON!

I usually love these kind of events and networking and talking, it’s something I am good at, but I have to say I am a little nervous. Rich is not looking forward to it, this is not in his wheelhouse at all but we’ll get through it and I’ll report back on how it was.

So I have a favor to ask.

I know my blog has a lot of traffic. I am talking almost 5,000 views and 1,000 visitors since it was created in May. That is incredible and I feel absolutely blessed to be spreading awareness about the disease as well as sharing things about my family.

I would love it if you could pass the blog along to more people and to hopefully reach families dealing with similar issues even if not Mitochondrial because a health condition with your child is never fun or easy and you need as much support as you can get.

I would love to see a large attendance at the event and I am certain you can help.

Thank you so much for being loyal followers!