Daphne – Page 4 – Life is RADD

Reversible

So my super smart, amazing research scientist husband spends just as much time researching Daphne as he does his job.

Don’t ask me when he has time for the rest of life.

Seriously he researches A LOT!

He found an article that I hope has changed our lives.

An article that I hope helps others.

An article that I have been so scared to mention it out loud, let alone write about it

…because something bad would happen (don’t ask me what)

…people would bombard the scientist

…maybe science would say too bad so sad it will not work

…our doctors would not believe in it

I was scared. I still am.

But I know the more science knows the better Daphne will be.

So here it is reversible

What is basically states is that there are 4 reversible mitochondrial diseases per her research. 2 fully reversible and 2 partially reversible based on a mild state and age diagnosis and some other stuff…..read it.

Daphne’s Disease is listed as partially reversible!

I mean when I read it and Rich and I talked about it I was so excited but then again contained my excitement so I didn’t jinx us or whatever else.

I met a Mito Mom who lives in Canada on a Facebook group I am a member of who told me to research articles and contact the authors to see what they know and to do the same with clinical trials since neither one of our kids are old enough to participate.

I said Rich this is what the Mito Mom said, you have to contact this doctor. So he did and she happened to respond super fast and was attending the National Symposium for UMDF in Seattle that we talked about going to but didn’t but we connected her with our Genetic Counselor so they could talk and meet.

We shared the article with our Metabolic Group and discussed the supplement N-Acetyl Cysteine which they wanted to discuss with us yesterday.

There are some GI issues that could come from it and maybe toxicity of the liver but she is functioning normal to date so we have to be a little careful with this supplement and will follow-up in 1 month to monitor her levels.

Also our San Diego Doc was just in the UK visiting her lab because of funding or a proposal she had requested. Small freaking world!

As our Metabolic Team stated we are now in a very small select group in the World and will get to know just about everyone associated.

My angry point of this post however is that the doctors (both the NeuroMet team and the San Diego Doc) did not bring up this article or any science from it and it was published over a year ago. RICH had to find it and really push them to explore this option.

This is even more justification that no matter how great of a medical team you have caring for your child, you are the only advocate for your child and much exhaust all means necessary to find a cure.

**This is exactly what I am talking about with all care not being equal and wanting to help bridge that gap for others that are less fortunate and do not have the resources or intellect to find this stuff out. I truly believe that is one of my missions in my baby being given this stupid horrible disease. I want to make this happen and do not want to be a website like all the others in memory of my daughters life.

I want my daughter to break the mold and defy the odds and science.

So the coolest part is the Doc in the UK recently received some money to study fibroblasts in the EARS2 gene mutations and she is willing to receive Daphne’s sample. I mean have any of you ever had this type of connection?!

Ok, maybe you have but don’t burst my bubble, it’s stuff like this that got me through yesterday’s procedure.

I hope and hope that she can find something to help Daphne and advance science. I have no idea on how long this will take. I will keep everyone updated.

There is another article on a suggestion of an intermediate stage and the use of another supplement but we are pumping the breaks on that one as we will wait approx 3 months before starting Daphne on anything else.

So you know these supplements are NASTY in smell and taste.

Two of them we put in her bottle and hide it with a combo of breast milk, formula and oatmeal cereal. We have tried oatmeal, applesauce and yogurt but to get her to eat enough to ensure it is all consumed is not fun, even if we do one bite.

Any tips for getting a baby to take them?

Thanks!!

NeuroMet Appointment

Well yesterday was the day we went to the NeuroMetabolic Clinic.

We were asked to arrive about an hours earlier than our scheduled time to complete consent forms and get bloodwork.

Poor Daphne had to fast for 4 hours, turned it to about 5 by the time they did her draw. She was a trooper through that even though she missed her favorite meal of the day…breakfast.

Don’t worry, I packed up her stealcut oatmeal and cantaloupe so she could eat right away.

I hate her getting bloodwork, only 1 time out of the several times she has had it, has it been a good experience. I mean her getting poked once and the vein found right away.

This time the phlebotomist came to the clinic so we did not have to go to the lab. I learned some things from our past visits that heat packs help the veins be more visible and larger and sugar water helps distract her a little from the poke. So I asked the genetic counselor to have those items for us since the lab always gives us a hard time depending on who we have. The lab did not disappoint with their attitude and lack of smoothness. The counselor even got annoyed after they poked her and dug around and had another guy look all while keeping the needle in her skin to say the vein just keeps moving. The counselor even asked if they should call another guy who they call the vein expert, they were a little annoyed which j think motivated her to get it right the next time. So they poked her other arm and got it first try. The counselor expressed her frustration to be about the techs and being a children’s hospital and you should be an expert, blah blah, the exact same things I have said. I even told her I have asked about a vein scan and they said they didn’t have it and she told me they were lying and to demand that use it the next time.

One of the perks to being a regular at the hospital is learning all the tricks to make your visit easier.

After the exhausting bloodwork Daphne had breakfast and a bottle while we talked to the NeuroMet Team (Metabolics doc, counselor dietician, nurses and neurologist). They asked about all the changes from our last visit and then the Neuro examined her since this was her first time meeting her. The neuro is the only one in her group that visits the the NeuroMet clinic so she will know Daphne well. She was pleased with Daphne’s head control, her tracking and progress that we reported. We were told Daphne has a good Corpus Callosum (a broad band of nerve fibers joining the two hemispheres of the brain) where other Mito patients and maybe specifically with her disease have abnormalities so that is something to be happy about!

Many many questions were asked and answered as well as a lot of science talk that I try to stay engaged with but they have a way of going way, way above my head, so at that point I start playing with a restless Daphne swinging her, talking to her in the tv which we pretend is a mirror and get her laughing and everyone starts watching her. I try to distract her a little so the docs can see her real personality and not the mouth hanging open veggie state baby that people she does not know brings out in her.

It’s her camera face aka paparazzi face similar to what Kim Khardashian posted of her daughter 😂

Next we met with a metabolic dietician and she did not provide any help at this appointment stating there is nothing documented in science that shows it helps. We have read a variety of diets, certain food groups and organic options that parents think help their kiddos, so I think a balanced diet is what we will stick to and seriously it’s not like she eats fast food or Mac and cheese and chicken nuggets. She is mostly veggies with some meat and fruit. If I ate the way she does I would be trim, but of course I can indulge in all the yummy fats she is not interested in.

If anyone reading this has any tips or favorite meals that are kid friendly (flavorful and homemade and relatively soft) leave me a comment please. Every weekend when it comes time to plan the weekly menu and go to the grocery store, I get stressed out! I love to cook, but finding he balance in what is good for Daphne and suitable for her two teeth (now 2 in fully and 2 half way in and 2 more poking through) and Adelaide and Rich and I who do not want not do we need to eat pasta that much!

We saved the dreaded skin biopsy for the end of the appointment. 😢

As a parent you can dig down and find an incredible amount of strength that you never knew was possible.

To hold you baby on her side while the Doc preps her leg for a surgical procedure, was not easy. She started crying just from him scrubbing her leg, before the bad part even started.

She did get a numbing shot that took foreve to get, stung really bad and I know hurt because he only poked her once but kept having to move the shot around to numb the entire area. I asked for him to go slow so it would not sting as bad and he said he would but due to the needle being so small, like a diabetic needle the lidocaine shot out in a stream not an easy drip so even if he went slow it would not always help. Argh!

I tried to maintain my focus on Daphne with my face mask on and play her favorite song, Farmhouse by Phish, and pacifier and her one and only game she likes but it only helped a little.

When the time finally came for the punch biopsy she did not feel it, thankfully. I watched them pull the little piece of skin out and put a piece of gauze over it and a clear sticky almost like ceran wrap bandage, that we get to remove today, and then he pulled the surgical cover off her leg that did take her skin off in one area. Poor bugga. She did scream and not like the antiseptic cleanser and the pressure from him applying the gauze. He said today we can just put a band aid on it but I don’t know how I feel about that. I will make that decision once I see it and luckily our friend and neighbor is a wounds care nurse and my dad a surgeon who always taught me (even though for years I swore air was better….yeah better for a scar!) that moist wounds heal faster and better!

All in all I think the clinic setup is good to get all specialists in one room together.

We DID meet the medical director of the group and he will be the main guy advising on supplements.

On the long list of inquiries we made about supplements, right now we plan to start a new supplement, N-Acetyl Cysteine, I will post about this soon. This supplement apparently smells and tastes like rotten eggs (oh great!) should be easy peasy to get into her.

Not!

We ran a blood test to get a baseline for this supplement that will go to Cambridge and then Stanford. The two places test different areas to get a conplete picture.
The skin biopsy will be studied at our hospital, a place in Cleveland and a place in the UK (post on this soon) and then some frozen for any future study we happen to find out about so we can grow some more fibroblasts and send it off without having to go through this again. That makes me very happy.

Of course we came home from the hospital with a sleepy baby and fed her a little lunch and gave her some Motrin to help with pain and swelling and Daphne did not sleep a wink, she has had Motrin one other time in the past and I think it did the same thing to her. A day where she really needed to sleep and we needed her to sleep to catch up on work, did not happen.
Daphne was up a lot the night before, feeling yucky I thought from teeth and probably so but also developed a cold. Her eyes were drained yuck at an incredible rate yesterday and this morning her eyes were crusted totally shut. Ugh! We were just off last week mostly with Adelaide being sick and now Daphne when she is going to be recovering from her procedure.

Off the the doctors we go today and fingers crossed she can make it a couple hours at the babysitter so we can get some work in and not get fired from our jobs for taking care of sick kids!

Here is my little sick bugga and her poor little leg

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

Re-Progression

Daphne had a episode of Regression at 10 months.

She used to be able to rollover, grab toys, push-up and feed herself.

It seemed like the change happened overnight.

For most families I have talked to, it did.

I cannot document the exact day but I do know we went to Hawaii the end of March and everything was fine aside from an extremely fussy baby.

She had her second opinion Neurology appointment April 5th and he commented on her primitive reflexes but thought everything else looked great and said Benign Infantile Hypotonia which we heard right before the trip from the Metabolics Doc as well.

The Neuro said unless there is a change or regression she did not need an MRI at this time.

I felt good about delaying the MRI that was ordered for her at 8 months by the first Neuro, until a few days later when she had a regression.

My heart was broken, I called her pediatrician asked her what to do, talked to the PT and scheduled a follow-up with Neuro. Well you can read how it went from there in the MRI post.

Since then we have been taking things a little slower, sticking to a routine (for the most part), giving her two different supplements and working with Daphne a lot.

Who knows what to attribute this progress to but I am so happy and I hope it continues.

As always, all of your thoughts and prayers are ever so much appreciated!

XOXO Desiree

Inchstone Alert

Since Daphne cannot hit “age appropriate” milestones.

I decided to help her do something that most 13 months cannot do.

Drink from a STRAW!

She has not liked a normal sippy cup, except to chew on it and let the water run down her chin.

She has always loved drinking from a cup but the art of slowly pouring in the right amount of water to not gag her or not spilling it down her chest, well it’s great for sitting poolside on a hot day but not practical for everyday (yet).

I have talked to her OT about options and techniques, aside from siphoning water with a straw into her mouth like I had been doing and she loves it but I really wanted her to drink from a cup. The OT suggested a little top to add to a water bottle and squeeze to help her learn but it leaked more water from the edges then what came out of the straw.

Then I found this article on Pinterest…..yes I love Pinterest and it’s my go to for just about anything.

I bought most of the cups in the article and others I found on her website.

I thought the first cup here was the best because I could use it without the internal straw and it did not spill much and Daphne loved it. I sent it to the sitters and showed her how to work on it with her.

Today I tried one of the other cups here which the blogger and the description of the cup said it has a magical suction when the lid is on that helps the liquid go up the straw faster. My oh my were they right.

My little bugga can drink from a cup!

She does not have to lean back or have it tilted, she can drink it just like a normal kid. Take that “age appropriate” milestones.

This is 13 months!!

**of course I tried to capture it on video but she just laughed at us. Little Stinker!

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.

Special Needs

A phrase I had a hard time with at first, but didn’t tell anyone.

I had a picture in my head of what I thought a “special needs” person looked like.

It was not pretty, it was like a vegetable state.

On a Facebook group I am a member of that term is the face of thousands of different kids who are all different and similar at the same time.

There has been a lot of discussion in that group in the few months I have been a member on whether our kids with the main symptom of hypotonia, some having a diagnosis or most being un-diagnosed are truly considered Special Needs Kids.

When I read my first post on this topic and some other posts, shortly after, I got freaked out and distanced myself for a little bit.

But I went back because I needed more information.

That group has been the most helpful group of any site I have found.

I do not think we would be where we are today had I not had the guidance and experience of those families.

So I have redefined and painted a new picture of what Special Needs is to me….

It is my daughter.

It is anyone that struggles to do the simplest of tasks.

Someone that may require special tools or equipment to help make their lives easier.

Someone that you take special care of.

So the next time you mutter the words special needs in a negative manner or you are just ignorant (sorry not sorry for my honesty) or see someone with a limitation, do not pass judgement, OR say in your head I am thankful that is not me or have a negative image in your head.

Re-define the word.

You are reading this blog because somehow you know my daughter and she is not a vegetable, she is the most loving little girl I have ever met that absolutely lights up at the sight of her Sister, Kitty, Me, Rich and Mara (yes in that order 🙂 ). She commands anyone that is with her, whether it be by eye contact, grunt, scream, squeal, kick or a swat of the arm.

Be compassionate.

Be loving.

Here is my little cutie in some of her “special” equipment.

***Note none of this “equipment” is for special needs, it’s for “normal” kids but you figure out how to make your childs life better with just about anything.

I will have another post on the cost of a device or equipment for “medical” purposes. I thought it was going to be in this post but like always I got on a rant and went down another path!

Cliffhanger…stay tuned 🙂

This neck float is amazing. For those kids that it is hard to hold their head up all the time and need that weightless movement, this thing does the job! Sadly ours got a hole in it over the weekend from I think our big water dogs nail (outside the pool, not on the babes at the time) A little patch will tell if I need to order a new one. In case there are any parents of special children reading, you can find it at www.otteroo.com.

This next little gem might be my favorite of all time. Can I get one in my size please?! I will not be able to slouch and those side bars are so comfy. Of course a smart nurse developed it. You can find it at www.snuggingo.com and here. Please ignore me in the video.

Seventeen

In May after Daphne’s MRI results came in, we were told it was bad for her to fast or even go long periods without eating. The thought is that the chemicals building up in her blood are also building up on her brain causing the brain damage aka white matter disease.

The Doc said she should not go more than 8hrs without food or sleep for more than that at night, but not to wake her to feed her. I told him she usually sleeps 11-12 hrs per night and he still said don’t let her go more than 8 hours without eating but don’t wake her….

Clear as mud. But when it comes to preserving your babies brain you are extra cautious.

So I challenged his 8hr timeframe because….

Fasting for bloodwork is 3hrs
Fasting for an MRI while breastfeeding is 4 hrs
Fasting for an MRI on formula or food is 6 hrs

Daphne fasted for one blood draw and it was about 4-5 hrs by the time they drew it and her numbers were elevated in some areas and lower in others.

So Rich and I decided to wake her 1-2 times per night and feed her.

At first we tried 2 times per night but that did not go over well with her, she was tired, would not eat the 2nd time and most times stayed awake and was then up all night and sleep is important for the brain and development.

We finally settled at putting her to bed around 8, (some nights it’s earlier depending on her day) and waking her at 1:30 A.M. and then letting her sleep on her own till 6-7.

I wish I could say its been smooth but we have more rough nights than we do good nights.

At least it feels that way…[insert tired exhausted laugh]!

Sometimes she decides to stay up at 1:30 till morning, sometimes she decides to cry all night because she is tired but won’t let herself fall back to sleep, sometimes she just wants to party and other times she thinks the day should start at 4 or 5.

It’s ok, we get through it. I look a little worse than before so I need some miracle beauty products…tips appreciated 🙂

Anyhow we take turns but when Rich travels it just about kills me, with working full-time and getting Adelaide out of the house, keeping the house going and taking care of animals. With his upcoming trip I am going to try and be better and make Daphne be better.

I may have just jinxed myself but I hope not.

Anyhow the BIG ANNOUNCEMENT of this post is that Miss Sassy Pants is now 17 lbs 5 oz and 28.5 inches!!

That is a 1lb 1oz and .5 inch gain in 1 month! (yes I took her to her pediatrician just for a weight check and plan to do it monthly) The doctor was very happy and said keep doing whatever you are doing.

Daphne since eating table food has always been a good eater and her portions have only increased but the thing about Mitochondrial Diseases is it does not process her food or the nutrients completely. I can only think that eating at night and completely resting allow her to absorb her food better with her body not having to spend energy doing anything else except for the automatic stuff like breathing, heart beating and maybe swallowing.

Here is the little chunk very proud of herself for sitting in the chair waiting on her therapist today!

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.