Daphne – Page 3 – Life is RADD

December Days

Time is flying!

Is anyone else feeling that way?

I am usually over prepared for Christmas but this year it seems to be sneaking up on me.

This is the first year that we are not going back East for the Holidays. Which is probably why I am not as prepared.

We have Daphne on a travel ban of sort, there are many triggers that can cause a regression in her disease and travel can be one along with stress, and sickness and with the cold temps, flu season and time change we are keeping her home to help avoid this for awhile.

Daphne’s only major regression was after a trip away last Spring, maybe coincidental or the cause, nonetheless we are being extra cautious.

With a little break in soccer for a few weeks we have been extra busy trying to enjoy full weekends instead of just one day.

We hosted Adelaide’s 9th Birthday Party (a little early) and can I just say when I turn 40 (not for awhile now) can I get a perfectly Pinterest party?! The girls were great, had fun at movie and paint your own pottery and I survived with 11 girls.

The next day we went to SkyPark Santa’s Village. This was a common Christmas destination for Californians but has not been open for 20 years. I was very happy to get to experience this with my girls. We also saw Gwen Stefani with her kids and Blake Shelton. I love celebrity sightings!

It was only 54 degrees and we were all freezing!

Our blood has def adjusted to the perfect Cali weather.

I am a bit scared with arriving on the East coast today taking Adelaide back to visit family and friends, the temps are supposed to be ZERO degrees!

I leave my head to toe down jacket at my parents for occasions just like this.

I will miss my poor little Daphne Poo, this is my longest trip away, 3 nights 😩, oh and my amazing hubby.

I remember when…

One of my little brothers was born with a heart murmur and a hole in his heart. He saw a cardiologist regularly, was told no chocolate or caffeine, had to wear special devices to protect his chest when playing sports and that seemed life changing enough and hard because seriously how can a kid not have chocolate?!

My mom used to make everything with carob (chocolate without caffeine) and he just never really ate candy bars or anything else. This was especially hard for my chocolate loving dad and with two teenagers in the house who were not used to restrictions.

After a few years of monitoring and testing they said if the hole did not close it would require surgery later in life. Something changed when he was little (about 3) and they wanted to put a pacemaker in and start meds and it seeemed like his life, our life would change forever.

I was so upset and could only understand a little, the magnitude of this now looking back, that one day I may not have him or may not have him the same way he was and I loved that little punk. I remember asking my parents to have a sleepover in my room with him in a tent and just make it super special and I did this for a couple days.

I will never forget those days, the scare and the ups and downs of his issue and the unknown for what his life could be.

(He is fine, major fail on the docs part and second and third opinions are NO JOKE!)

Adelaide out of the blue asked to spend the night in Daphne’s room. She stayed in there for two nights. The first night Daphne did not last but not because of Adelaide. Daphne had been battling with an illness, teething and now thrush since before Thanksgiving so it has been VERY tough in our house.

Adelaide must have the same feeling with Daphne that I did with my little brother and that made me feel so good as a parent that she could see this even though we do our best to let her see Daphne’s limitations but not make them an excuse for not living each day as normal as possible.

I hope these experiences keep her heart warm and open for her entire life.

The love these two have for each other is unlike any love I have seen before.

My Girls in October

October was a big month for Daphne, she started babbling letter sounds…Ba, Wa, La, Lo and M sounds

and…

started rolling over again, all over our floor. She loves it, she cracks up as soon as she gets over and just keeps on going.

This is not the best video because she got distracted kicking the furniture but you can hear her laugh and see the rolls!

Adelaide is loving Mid Year Cheer and doing so well.

I loved cheerleading when I was a kid and it makes me happy to see her enjoying it just as much as I did. Hopefully she can avoid the broken arm, she is also a flyer (princess they call it).

He is not one of the girls but a furry thing I care about…Enzo is doing great and is so rotten and LOVES to play!

Pirate Baby

It’s not like she doesn’t battle with enough.

Daphne had her follow-up with the Neuro-Ophthalmologist this week and I wanted to discuss something we noticed a little over a month ago that we just called “Wonky Eye.”

We talked to her regular Neurologist about it but he could not get her to repeat it which was good because it was minimal but it has been more apparent lately and I even grabbed some pics to show the doc in case she could not get her to do it.

Now she has what she calls drifting outward which is common in patients with neurological conditions.

So we will try to correct it and strengthen each eye with Patching Therapy (1 hour per day per eye), maybe glasses but right now she will rip them off and eat them…..ABSOLUTE last case scenario is surgery. We will follow-up in 2 months to check her progress.

I have ever said I HATE HATE Mito and wish it did not exist. This is simply not fair!

Wonky Eye on the Right

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

Baby Vampire

Daphne is loving her new teeth.

So much that since she can’t talk or won’t talk, she grunts or whines or now…bites to get what she wants or to show her displeasure with you.

Adelaide plays really well with Daphne.

Daphne really loves playing with her but Adelaide can also make her mad and now she can show her the frustration.

Eek! Sorry baby girl but your lil sis was mad.

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

Baby Giggles

I often play videos of babies giggling for Daphne and she loves it.

I was finally able to get her on camera giggling.

I hope you will want to play this over and over as much as I do.

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.

Closing out July

Things have been relatively calm since the NeuroMet appointment.

We are patiently waiting on her biopsy to heal so she can swim again which I think she really wants to since I put her feet in the pool and she was grabbing for the water.

It has been 2 weeks and it is still there and I have been treating it like my wound care friend had recommended. It looks great so far.

Adelaide has gone back East to visit friends and family. I think Daphne misses her a lot. I show her videos of Adelaide and she just laughs and talks to her.

Daphne’s 1st pony and she absolutely loved it, just squealed and laughed and talked.

Rich and I took Daphne to an Angels vs Red Sox game so we could all see Big Papi play in his final year.

I have loved the Red Sox and all Boston sports since I went to college there. I am so happy my baby girls first game was to see them. Adelaide will also get to go to her first Red Sox game back east.