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

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….

  1. Fasting for bloodwork is 3hrs
  2. Fasting for an MRI while breastfeeding is 4 hrs
  3. 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!IMG_2718