Baby Steps

Little Miss Daphne Poo has been loving her new found skill that we call “Take a Step” 

Now mama needs a back brace and Daphne needs a harness because weighing in at only 21lbs the girl is heavy, just pure dead weight.

I know your probably laughing saying really, but I tell ya, YES! 

I know she will not get easier and only heavier (fingers crossed) so I had to push myself to start working out again to handle this little sack of potatoes. 

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Army Crawl

We take Daphne to PT 4 days a week. 

Since she is able to sit for a couple minutes unassisted her therapist has moved on to teaching her how to army crawl.  

I have tried but felt like I was just getting her in a frog position and she was trying to move her arms but her mama was failing guiding the legs.  

Here is a short video of her therapist showing me how to do it, this is at the end of her session so she is a little tired.

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A Day at Disneyland

Disneyland is not my happiest place on Earth!

My parents visited Disney for like 12 years in a row starting when my oldest brother was 2 weeks old. Bleh! Having kids of my own, I cannot imagine walking around in the heat of August 2 weeks post partum.  My poor mom.  My freshman year of college my parents decided to go to Disney for Christmas. I was so annoyed, I went to my grandparents.  Then in college I worked at Disney World in Orlando, Fl as a Lifeguard at Typhoon Lagoon.  It was rated to be the most prestigious Co-op for Marketing majors, Michael Isner the CEO went to Northeastern and built the luxury dorms on campus, so okay I went.  Well, my experience in Co-ops let me know exactly what I did not want to do ‘when I grew up’ and definitely how I did not want to treat people.

Every once in awhile I have to suck it up and go.  We only live 20 minutes from Disneyland and I consider myself lucky to have only visited 4 times now in 4 years.  Two of those visits I was very pregnant, not my smartest move.  Now my husband got to tag along for the first time since we have lived in California! I am not sure how he has gotten so lucky.  Just to pay him back, he had to go on all the rides and I hung with little Daphne.

Adelaide got a friend ticket so she could pick whomever she wanted. She picked a sweet little girl she has played soccer with twice on an All-Star team. This little girl is afraid of heights ūüė≥. I did not even know how to handle that, but she had the best outlook and said this is Adelaide’s day and I want her to enjoy it and I will do whatever ride she wants. I wish all kids had her attitude.

Daphne surprisingly did really well, she lasted all day without a nap, ate great and was not too freaked out by the noises.

At the end of the day all the kids had a great time and Daphne had her 1st visit to Disney.  We do it all for our kids!

XOXO Desiree

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Twenty

I am so excited!

Honestly it’s almost better than the unsupported sitting.

Almost!

Daphne has FINALLY reached 20 pounds!

20 pounds 4 ounces to be exact

This is a huge feat with her disease and with all the sickness she has gone through recently.

She lost over a pound just a month ago which set her back to 18lbs.

Keep praying, sending good vibes or whatever you believe in because it is working.

As my mom says “Daphne is writing her own book!”

The other big part of this weight gain is I told the pediatrician we would start vaccinating again once she hit 20 lbs.

When we received her MRI results and diagnosis we stopped vaccinating do to the unknowns of how the mitochondria handles vaccines, especially the MMR (eek, just saying it freaks me out!)

I have always given both of my kids one shot at a time with plenty of time in between and this restart will be no different but things are going so well I hate to risk it.

I just love our pediatrician, I scheduled her shot appointment for next week with another doc b/c our normal doc was booked for the rest of the month and we are going to Disney at the end of this month and wanted to get the shot in her before visiting that cesspool of everything and I just received a call that our normal doc has made time for us since she knows Daphne best and would like to be the one doing the shot appointment.  Good Doctors ROCK!

Wish us Luck!

xoxo Desiree

Geographic What?

Well 2017 has not been so kind to us health wise…yet!

I got sick New Years Day and I am still sick.  All of southern California I think is sick with the same crud.

Bleh!

Daphne has been feeling meh for the past few days and it turned into something yesterday with a cough, and low grade temp.

Yesterday evening she spit up at therapy and then after she woke after going to bed for the night puked a little of her dinner up but then ate 3/4 of a banana and was wired for hours.

Till about 1am that is. ¬†Luckily it was Rich’s night [insert snarky smile]

He said she had trouble breathing, swallowing and coughing and her temp was still hanging around so off to the doctor we went today.

Croup!

A little oral steroid and hopefully a couple days of rest and she will be ok.  Fingers Crossed!

We have a very busy weekend ahead and actually for the next couple of weeks so we cannot handle a sickness slowing any of us down.

Adelaide also complained of sinus pressure last night and that kid is the one that can really not get sick since the craziness involves her…

Soccer Tournament Two Weekends in a row with a Cheer Competition in San Diego Sunday..she needs to be in tip top shape (literally)!

She is not a fan of the Neti-Pot (I love it!) nor does she like the steam inhaler thing, so a little vicks, saline spray to clean her nose and off to bed she went, can we say Placebo effect?!

Hopefully she just wanted some attention from the rest of the sick folks in the house.  Rich has this as well but not as bad as Daphne and I.

While at the doc getting examined I asked again about her tongue the red spots and white areas and that I cannot brush them away but she does not seem bothered and the doc said you know I think she has Geographic Tongue… ummm what?

Well it sounds right and the pictures match up to Daphne’s tongue and the side effect is sensitivity to salt and acidic foods…..ding ding her mama has this as well. ¬†I do not have the splotches as much as Daphne but I cannot handle salty food AT ALL and acidic bleh. ¬†Probably why I have not loved fruit that much. ¬†It makes my mouth RAW.

This is normal and nothing to be done about it just avoid the foods that bother you.

We are sensitive gals, what can I say.

Any tips you have for good organic, non gmo, no sugar, no crap vitamins (gotta stay with the trend)or steps to boost your immune system, I am all EARS!

xoxo Desiree

 

 

 

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

It’s a Christmas Miracle ¬†

Well…

Not really, but I have always wanted to say that and this is probably as close as I will get, but it is after almost a year of therapy.

Miss Daphne Poo is doing really well with unsupported sitting.

Rich was able to capture it on video today

One Whole Minute!

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The little things for me are being able to sit her on her changing pad while getting dressed and button the back of her shirt or comb the back of her hair, it’s really just great!

XO Desiree 

Little Inchstone

So as I have mentioned before Daphne had a regression in April of 2016.

What that means is, it is a form of brain damage.

It is unknown if the skills lost will be regained or get worse.

For Daphne she lost the ability to use her hands, she could not even open them, they were in clinched fists all the time, unless she was sleeping or completely relaxed then they would open slightly, also her arms and legs became very stiff and she also lost the ability to rollover. 

She was about 10 1/2 months old and this was so hard for us to see. We continued therapy, working with her and at this point in her life she really loved massages all over her body to help with I think sore muscles.

So now that most of her skills have been regained but glimpses of the regression still exist and she is definitely much weaker in those areas which were already her weakest areas, any little inchstone makes us all so happy and we cheer “Yay Daphne, good job” she gets so excited and is so proud of herself, she has this little grunt/laugh that she does when she has accomplished something. 

Earlier this week she had a dentist appointment and we did not have any oatmeal made so she and Rich were going to have a breakfast date at our local breakfast spot but while getting ready to leave I tried one of Adelaide’s pouches of applesauce. 

Note, neither one of my kids liked purées or mashed potatoes as toddlers (guess it was a texture thing) and Adelaide did not like applesauce or oatmeal for years, probably not until she was in elementary school, so this was super cute to see little miss poo poo eat from a pouch and hold it all on her own.