This week Daphne has been taking a couple steps while being supported.
Of course she cannot sit up independently yet but anything that challenges her brain and creates new connections is GREAT!
She is very proud of herself and just laughs when standing.
You can see the determination in her to get each leg working.
This is a huge milestone for little Daphne!
In Prep for next Mitochondrial Awareness Week (NEXT YEAR)…..Walmart is ready, go get your Green Light Bulbs!
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.
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!
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
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
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.
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!
If it’s not, your not doing your job.
Rich and I had a challenging event this week and it was one I NEVER thought I would be faced with.
Call it a life lesson for us or a life lesson for her but either way it was tough.
I reached out to several people for guidance.
I needed it.
I was at a point of exploding and knew I needed to handle it calmly (not necessarily a strength of mine) so I knew I needed a clear plan by the end of the day.
I had to sit all day at work and fester over this.
It was worse than being the kid knowing your going to get in trouble and just waiting for your parent to bring it up.
Ugh!
I talked to several people throughout the day, it’s what I do for guidance, because I know my thoughts or opinions are not always the best and getting different perspectives and ways to handle something is. Rich is super calm and collected but a little too nice and believing sometimes and I am definitely the hardass.
We gave her a chance to explain what she did and why she did it and how she thought she should be punished.
Unfortunately that did not happen and not much remorse was shown except for different elements of her punishment.
The talks continued into day two and three and I hope we are finally on the other side. She is accepting of her punishments now and is being her normal sweet sassy self.
This situation was tough and I know this will not be the last and they will get worse in their severity but I hope that all these life lessons are remembered and one day she will look back on them and appreciate it.
I have encountered plenty of people in my life that are a real pain in the butt and I do not want my child to be one of those.
My motto: “Kids, the good, the bad and the ugly are 100% a product of their parents.”
There is plenty to influence them but it’s your job to provide the tools to make them successful at handling anything.
There were signs and words from friends and family that I was doing the right things even if she made me doubt me.
I have not been on Pinterest in too long and that day I logged on and found this article…boy did it hit home:
“So stand strong. Your child needs you.”
XoXo Mentally Exhausted Momma
Rich and I had our first weekend away from the kids since Daphne was born 16 months ago!
I spent one night away from Daphne when she was 10 months and Rich has traveled a lot, so it was not as hard for him.
Luckily we were very busy and surrounded by great friends to keep me distracted.
We face timed with the kids a few times and all seemed to be going well.
Daphne is still surviving without me, it’s hard to believe 😉
It was so nice to get away with just us.
It was a very long travel day, over 14hrs but we soaked up every minute of sleep on the plane.
Honestly I have never slept that much in my life.
It felt amazing!
We were lucky enough to attend a wedding at the fabulous Bedford Springs Resort where Rich and I got married.
We also considered this trip a little early anniversary celebration since our date is just 24 days away.
The resort will always hold a special place in my heart and I will always love visiting it when I can.
I already have another plan to go back for a dear childhood friends wedding, I am excited!
I also make a stop at my grandparents and great-grandparents grave site. My grandparents were two of my favorite people in the world and I miss them everyday. Just walking up to their spot brought tears to my eyes.
Rich and I were lucky enough to get married on the same date as they did which will always be so special to me.
Oh and the little town of Bedford was hosting their Annual Fall Foliage Festival…..I love small town festivals!
Best wishes for a lifetime of Happiness to the Beautiful Bride and Handsome Groom, Dom and Jessica!
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!
Life is RADD 