Family time – Page 2 – 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.

First Born

Adelaide is my first born and no one can take that title from her.

She has had a rough few weeks and that is part of growing up, but truth be told it has been much harder on me than on her.

As my uncle laughed at me telling him what we have been going through with her, he said “Desirée…she is just like you!”

Yeah, yeah I know but wowsa!

Then he said, “wait until she turns 16, she is going to hate you!” Oh great, thanks! 🙂

But even with these moments, it is so nice for her to see the reason for my doings and say “hey you know, it wasn’t bad being Hermione for Halloween.”

(back story…she begged for this in July and wanted the really expensive cape from Universal and I said no, but instead ordered it from Amazon, she was thrilled…..until the Halloween catalogs starting coming out then she wanted a $200 costume from Chasing Fireflies….sorry Sista, not happening and you can imagine how it went from then, but I did offer her to buy a new costume with her own money which she did not have enough of and she could find ways to make more money but that was JUST NOT FAIR!)

She has returned to her sweet self and maybe even a little more compassionate than before and expressive of her feelings and descriptive of her days.

That is all I want as her parent.

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!

Fun little Family Weekend

Since Adelaide is grounded we had a fun little family weekend.

Adult soccer for Rich and I Friday.

A trip to the vet for our poor Mara girl as she is battling with something unknown but not feeling well and losing too much weight.

Doubleheader Soccer game for Adelaide on Saturday.

A little shopping in between soccer games.

A delish dinner on Saturday with Saffron Pancetta Risotto with Butternut Squash and Steak.

Finally getting the garage back together after refinishing it. Pictures to come once it is complete.

Sunday Breakfast at the house then back to the mall to put the finishing touches on my outfit for family pictures later that day….hope they turned out okay because I was off my outfit picking game.

Oh and a little trip to the Animal Shelter to drop off some donations and to play with some kitties.

Family pictures went pretty well, I hope we were all smiling at once in at least one of them.

Then dinner at my fav Sushi restaurant and the girls had a great time. Daphne was super good, maybe her best dining experience and Adelaide was eating everything and loved the wasabi in her shrimp pieces. So proud of my girls!

Oh and my husband he was his great self!

Hope Everyone had a great weekend with their Family!

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!

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

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!

Father’s Day Weekend

We had a Great and Relaxing Father’s Day Weekend.

Rich and I finally got a Date Night Friday, it seems like it has been forever. We had a very yummy dinner at Dublin 4 Gastropub with craft cocktails.

We tried to catch some live music at our soccer teammates Bar but we missed it, so instead we hung out with she and her hubby.

It was a Fun Night!

Until…..

Daphne decided to stay up when I woke her at 1:30 A.M. for her bottle (I was so tired) till 3 then I woke Rich and he stayed up with her until 6 (I think he said he fell asleep on her floor) then I was back up at 6 till 7:30 and finally we all went back to sleep until 10:30.

Adelaide slept through it all, lucky girl!

Then Rich got his first Father’s Day present…Family Pictures on the Beach! He was not excited but I was. We used the same photographer from Daphne’s newborn photoshoot and she is just amazing!

Sunday we went to Souplantation (Adelaide’s favorite) for breakfast. It was pretty gross. I like the normal menu but they did not do well with breakfast.

After Rich and Daphne took a nap we went to our neighborhood pool association for a cookout and swimming.

It was a very hot weekend, Sunday it was 102 degrees and today 108. That is not normal for around here and I look forward to the hot temps leaving and our perfect California weather coming back.

Memorial Day Weekend Keeps Going and Going

We enjoyed the long weekend!

Mostly…..

Adelaide had a sleepover and Daphne decided she would stay up till Midnight and was super fussy. The trick that seems to work with her when she gets to the point of over tired, you missed her window, the kids woke her or she knew other people were in the house mood is to let her cry for about 10 mins in her crib (don’t freak out, we watch her on the monitor the entire time) then I go in and rescue her and rock her to sleep. It kills my back and it gets hot holding her so we have this routine of swaying in front of the humidifiers cool air then turning around and slowly moving to the crib where I then break out my super skills and gently lay her down without waking her.

We enjoyed a cookout with friends with ceviche and s’mores.

Adelaide, Daphne and I enjoyed the Nordstrom Half Yearly Sale and lunch out while Rich worked.

We actually were able to finish all the house chores (mainly mountains of laundry) and still have another day to relax.

Then Monday night Daphne was up most of the night not feeling well. Her friend at the babysitters was sick with a cold and pink eye so we were bracing ourselves.

I stayed home with her Tuesday to get her better and let her rest. She slept a bunch that day and her appetite was pretty good considering she felt yucky. I also took her to the doc just to make sure if she was getting anything I would get ahead of it before it exploded.

We have learned that with Mito kids its not good for them to get sick, it can linger for much longer in their bodies and more seriously it can cause a regression or a mito episode. We have been walking on eggshells with Daphne since the Docs have pointed towards Mito because stress can also cause the above as well as their routine being off, nutrition, etc. The list is too long and seemingly unfair since it covers just about anything in life but we are doing our best with it.

Monday night came around and Daphne was just a little better but not much so yet another day at home for us and this time I had to call in reinforcements around lunch because she was not having it and I was trying to work and tend to her and she needed a fresh face so Daddy to the rescue.

Have I mentioned yet how much my back hurts?!

The little stinker fooled us. She was not 100% but was much better. I have been home from work for 5 days now and the cabin fever is pretty high. All will be back to normal tomorrow but I am sure Daphne will not let tonight be easy.

Anyhow I really just wanted to write a little to basically state, no real news on Daphne and my poor back 🙂

Here is a video from tonight (excuse my look) Daphne discovered kicking Rich earlier on the changing table and thought it was hilarious that she wanted to try it out on Adelaide.

She got the reaction she was looking for 🙂

A Day together

Yesterday was a very tough day for our family.

We all stayed home and spent time together.

So to brighten the mood I tried to catch moments of Daphne laughing and smiling but the little stinker always stares and will not crack until the phone is out of sight.

daph

She loves to giggle at our shadows when walking

She is so cute when she wakes up in the morning. I tried to capture it but she saw the camera