Tag: Adelaide

2017

For New Year’s Eve this year we went to Great Wolf Lodge which is a brand new indoor water park just down the road from us.

It was great and so much fun that for 3 days we didn’t even go outside…I am paying for that now with a nasty head cold.




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Our family has reflected together on 2016 and determined even with all the good, it was not a good year for us with Daphne’s life changing diagnosis.

This year I hope for my family that we continue to stay strong, grow together, never stop fighting for what we believe and take more time to enjoy each other.

xoxo Desiree

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!

 

 

 

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.

This girl 

This girl is amazing.

I miss this girl more than anyone can imagine.

I wish I was as cool as she is as a kid.

I always try to keep her in check with whatever little thing she faces and new little attitude and fade but I am absolutely envious of her true her.

She is so confident, outgoing and carefree to only name a few of her amazing qualities. 

This is the last week of summer camp dressed up as a Tacky Tourist. 

Stay true to you baby girl!


I love that she has the confidence in me to help her pull off these crazy ideas!

I miss my mini me.

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.

You can see here how she cannot handle the heat and she is not even in the sun. This was short lived. I felt how she looked!

Look at those little teeth! She has worked hard since May on these bad boys.


Daphne cannot handle the heat or cold temps, it’s part of the disease.

We took a little break in the shade and Daphne was loving this game.

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We took Adelaide and her friend Keira to Sawdust Art Festival and they made a Vase.