Adelaide – Page 3 – Life is RADD

Cousin Visit

We had such a fun weekend.

One of those weekends that may take a week to recover from.

Rich’s cousin Jon came to visit.

It’s been almost 2 years since we saw him.

After a week of Adelaide being sick and Daphne teething, we needed a little fun.

Friday the guys kept Adelaide to give her one more day of rest. We met for lunch at my favorite sushi restaurant and then they went to Dave and Busters while I went back to work. Not really fair.

Friday evening we had our Championship Soccer Game and we won! 2 years in a row!!

After the game we had our favorite babysitter so we could take Jon on a tour of Lake Forest.

Fun, Fun Times 🙂

Is that 👆🏻not the best Uber Driver ever?! Super sweet guy!

On the weekends we usually walk to our favorite breakfast place, Bagels and Brew and this Saturday was not different. Especially since I forgot to make oatmeal for Daphne and it takes over 30 minutes because she only like steelcut.

Geesh getting the crew out of the house took over 30 mins and the walk there just may have been the longest in our history of walking to bagels and brew.

Maybe, just maybe we were all tired from the night before but we were easily distracted on the trail looking at all the neighbors landscaping and hummingbirds so we had to cut through the park to make it faster.

The men then jumped on the band wagon with the Pokemon Go…

I almost peed my pants laughing at them.

I mean seriously what grown person downloads an app that has you chasing mythical creatures that nobody can see unless you use the app that apparently makes your phone so hot it feels like it’s going to explode.

To each is to own I guess but enjoy these videos.

All that Pokemon hunting had the guys so tired they needed a nap. Rich tried to say Daphne needed a nap but all the girls in the house were up doing chores and relaxing.

Daphne did take a nap a little later so after Rich took Jon to Sammy’s for a little OTB and I took the girls to Nordstrom for the Anniversary Sale! I barely got anything for myself 😢 seriously I think a shirt and a pair of shoes. Adelaide made out well, of course! Expensive little stinker!

I need so much more!

I keep telling myself it’s for the new school year and Christmas presents.

For dinner we enjoyed some amazing steaks cooked by Jon and swimming. Jon is used to the hot and humid temps of the south and here in Cali it cools off at night, to the point he was freezing, kind of funny.

Sunday was his last day and we really wanted to let him experience the blow hole in Laguna Beach but it was closed.

I did meet an OT who shared her website with me that she said has lots of good tips, can’t wait to check it out.

I also brought a succulent home with me, Laguna Beach is full of them and I only wish my garden could be as nice as those in Laguna.

We usually end the weekend at our Association Pool. The adult pool has Sunday Funday with a bar and the snack bar is open and it’s just a nice way to unwind and relax before the work week starts.

The guys wanted Chinese for dinner and I knew we could talk Adelaide into it with a buffet, that girl loves a good buffet!
We were all exhausted last night and especially this morning, but had a great time!

Until next time Jon Boy!

Desiree

NeuroMet Clinic

All has been relatively calm in the house, except…..

Daphne is TEETHING!

Adelaide has a high fever (hopefully just a cold but she had the stomach bug over 4th of July weekend)

AND

Daphne has been partying with Rich late night a couple times this week.

In all seriousness Daphne has been teething for months.

I asked another Mito mom if she thought it took longer than normal for her daughter’s teeth to come in and she said yes. Her daughter is 21 months and she only gets about a week break in between teeth. She is currently working on her molars. I do not know how Daphne is ever going to get molars. Right now at least 3 of her top teeth are coming in, probably all four but I can see the points of 3 of them. Her gums have been red and swollen since before her 1st Birthday. I feel for the little girl but for the most part she has been happy, she just has her days.

Yesterday she was fussy all day at the sitters and did not sleep, last night she was up from 1:30-4. Today she slept at the sitters and I hope she sleeps tonight. The teeth look like they have made some progress.

It’s a real bitch when your body sucks at making energy and you require energy to push your teeth through. Mito SUCKS!

Doctors….

We haven’t seen them in awhile.

It’s annoying and causes anxiety and lots of questions.

I also think its been kind of nice. We have gotten to settle down from all the running.

We go to the doctor next week. Our 1st appointment at the Neuro Metabolic Clinic.

Here starts the “Care”

So I will remind everyone I am NOT on Team Metabolic Group.

They really annoy me and I try my best to be polite and respectful but I am starting to near the end.

I like or did like our Genetic Counselor but she is also annoying me.

Like I said we have a lot of questions and have sent various emails so I compiled all of them and sent one collected email with all remaining open items, and then Rich found another research article and passed it along with some questions and the doctor replied perhaps they can wait for an appointment because it is becoming difficult to keep track of all the emails and effectively treat the patient.

Perhaps I am bias and selfish but I just compiled everything for you and items were addressed except the latest article Rich just sent them.

My guess is they are embarrassed that Rich is finding research, (stay tuned for a post on this), that they know nothing about. They do not acknowledge the articles he has sent because they do not know. It is beyond frustrating.

It’s like politics in a company and I deal with that during the day, I cannot and will not have that with my daughter and her health.

I did take a little work approach with the Docs and created a RAIL (rolling action item list) to have every single little comment, issue and question we have addressed and it will remain open until I decide it gets closed.

Some may think I am OCD but I just like things a certain way and to be completed and not overlooked. I do not see OCD.

So the latest email asked about which Neuro we will use the 1st, 2nd or 3rd one we have seen or a new one in their group.

We did not like Neuro 1, Neuro 2 was great and the biggest advocate for Daphne and one of the best physicians we have seen to date but he does not know anything about Mito, Neuro 3 is Dr. H and I do not like him much but he is like a Mito Genius per the Mito Community but I do not want to rely solely on him so I agreed to the Neuro in the Clinic for now. After all we have to meet them first before I can hate them 😉

During this appointment Daphne will get more bloodwork and a skin biopsy….eek!

I have put the biopsy off for awhile now. I mean who wants to hold down their baby and get a hole punched out of them. Yes she will be numb, but still I cannot even stand for her to get her blood drawn.

We will also talk to a variety of specialists and maybe just maybe the Medical Director of the Group to understand all the supplements we have asked about and they just gave the dose and said start them 1 week apart without any conversation. The total number of supplements would be 8, really docs, really?! We have trouble getting two into her. The 3rd has been a nightmare and pretty much non-existent. We may be breaking them down and I do not feel bad about it at all.

This is our baby.

Our sweet little 13 month old that has a stupid horrible disease.

That has a group of doctors that do not seem to care.

That seem to just act like they are maintaining her comfort and not trying to cure her.

That have the most minimal hours of any doctors office I have ever visited.

I do not know what they do when they are not in appointments, which is only like 2 days a week half days. They better be researching and exhausting all means to help their patients. If I find out any different they will certainly wish they had never met me. I am working very hard at making connections in the Mito Community, setting up a family social in the area and getting a grand rounds for families and doctors.

God give me Patience and Strength!

So stay tuned….

Desiree

July 4th

We had such a great weekend!

We had some of our best friends visiting from WV.

The girls got to share in a special experience of Harry Potter World at Universal.

Adelaide and I (with Daphne in the stroller) ran our first 5K with Rich, Jen and Alex.

We got to watch some of our towns parade before taking our friends to the Airport and then enjoyed 4th of July festivities and fireworks at our Association.

Daphne was mesmerized with the fireworks and I have to say I was in aw over her until a friend who’s son has seizures said I wish I had given him his seizure meds before the fireworks…Yikes.

I then stopped Daphne from watching them so intently. She does not have seizures but they could develop anytime and I don’t want them to start from silly fireworks.

Super Proud

Adelaide is a GREAT daughter.

I mean absolutely Stupendous.

Words really can’t describe how great she is.

Of course I have always known this.

She is a Mini Me 🙂

She is really turning into a lovely young lady.

Lately she has challenged us so she has been helping out more with chores.

A couple of weeks ago she commented on being besties with the laundry room.

She is really great at making her lunch for camp and that is not a chore but she really loves creating her meals.

She also has her own personal style and is so confident. She is sporting her hair as a donut for crazy hair day at Summer Camp.

Nerd Grade

Adelaide’s Last Day of 2nd Grade was last week.

This year has really gone way to fast.

Adelaide had a tough last day saying goodbye to her teacher.

Every year she loves her teacher which makes it easy for us, but this year especially,she really loved her teacher.

Adelaide did not know the stress Rich and I shared at the start of the year with Adelaide being placed in a combo class.

***Disclaimer*** I said yes to a combo class at the end of 1st grade thinking it would be a combo with an older grade and split…..really not knowing much and I asked her teacher and she said she would fit well.

Well it seems to be like drawing the short straw, or at least that is how we felt the day before school started when she got her class placement.

We went through the appeals process and tried to meet with the Principal but he would only accept an email so we got nowhere.

I was very pissed off and wrote off the Principal (there were other incidents from the previous year that I was holding against him so don’t think I am bad from just one event).

We were really concerned with the psychological aspect of her not feeling like a true second grader, not following the same curriculum and feeling alienated.

We met with her teacher to understand the structure of the class and voice our concerns. This was Mrs. Gilbert’s first combo class ever and she is a young teacher so we did not know how this was going to work, especially with 8 2nd graders and 23 1st graders.

The school year had it’s challenges with sitting at a different table at lunch from her friends, having to do school work outside while the 1st graders had a recess the 2nd graders did not participate in, having the other 2nd grades work on subjects and projects that she was not working on and so on.

But what it did provide her was self motivation, excelling her skills to work independently, no classroom behavioral issues, a since of pride knowing she was in a select group, the ability to have class outside when no other class could do that and not be held back by various skill sets a large classroom has with there just being 8!

All in all it was a good experience but Adelaide told Rich one day at the end of the year she would like to be in a normal classroom next year.

So…we wrote the teacher and explained how thankful we were for her but she wanted to go back to a traditional classroom and she replied with the principal on copy (UGH!) complimenting Adelaide on being the “type” of kid that does well with this style of learning but she understood our request.

I told Adelaide that we asked she not be placed in a combo class next year and she said “i like it and would like a combo class again”….seriously kid….[smack forehead].

We will just have to see how it plays out now.

She is onto NERD grade Next Year!

I forgot to take her picture on her last day so here is a picture shopping at Nordstrom the week before 🙂

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 🙂

Amazing Artist

Adelaide has been taking Art lessons for two years now and is doing Amazing! These are not all of her paintings but those that are not framed yet.

I am so proud of her and impressed.

Sometimes I wonder what the pieces are going to look like with the ooey gooey fingers so goes into class with from eating snacks but the girl has got it!

She just brought this one home and I think it is my favorite one yet!

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

Aerial

Adelaide has been working very hard at gymnastics.

She loves it.

I am so proud of her. She has been working on mastering her Aerial on the ground.

She nailed it!