Mia's Story: April 2007

Good News at 11 Weeks!

They tested Mia's lactic acid level this morning and it was down to 2.2!! The lowest it's ever been and already within the goals set by the doctors. This is truly a wonderful moment! Dr. Berry was very happy (and even possibly surprised) that it had dropped so low already. He thinks the thiamine may be responsible, but it is possible the ketogenic diet is already working as well, and of course all the prayers!

Mia is more wide awake and aware than ever before and really enjoys our little walks around the hospital. We took her with us today to get some lunch from the cafeteria and then back to her room to eat. She gets really relaxed walking around in our arms.

Hope everyone has a great time tonight at the Miracle for Mia benefit. Wish we could all be there with you but you must party on without us! See you all soon.

High Fats and Butterflies

Two big events for Mia today. She started the next phase of her treatment for the metabolic disorder which is a diet know as a Ketogenic diet. The diet involves high fats and low carbohydrates. The idea is that Mia's body will learn to get it's energy from fat instead of sugar, since the nature of her disorder is that her body cannot metabolize sugar to create energy. So far she is tolerating the diet well and does not seem bothered by it.

The other big event today was the arrival of the much anticipate helmet, decorated with beautiful butterflies. Rusty, as seen here, is the one who made the mold last week and came to show us how the helmet worked.

Mia wasn't feeling so happy about the helmet at first, but once it was on she seemed okay with it.

It was pretty exciting seeing the helmet go on. It was kinda like seeing Darth Vader get his helmet for the first time, except with less evil and more butterflies.

Mia adjusted to the helmet pretty quick (seems to be her MO with just about everything) and settled in for a nice little sleep after her feeding. She'll wear the helmet on and off until she gets used to it and then will wear it almost all the time. It should take a solid month or so for the helmet to reshape her head.

This picture has nothing to do with fat or butterflies, but it was too incredibly cute not to post it.

Moving Day

Mia moved out of the NICU at last and into a regular room and Children's Hospital. She has a nice bed spot near a window.

Nurse Sara getting Mia hooked up to her mobile monitor.

Mia all tucked in with all her stuff and ready for her elevator ride up to her new room.

Settled in with Mom.

Very comfortable in her new room.

Miracle For Mia Benefit - This weekend!

Miracle for Mia
When: April 28th, 7:00 p.m.
Where: Stephen Talkhouse 161 Main Street, Amagansett NY
What: Fundraiser for Miracle For Mia, Inc. Music by Nancy Atlas, The Realm, the Jambandits, Easy Chief, and Leslie Mendelson. Food by Michael and Francesca Vignapiano. Silent auction and raffle.
Info: (631) 726-6410

Yoga for Mia
When: April 29th, 9:00 a.m. - 7:00 p.m.
Where: The Ross School, 18 Goodfriend Park, East Hampton, NY
What: 12 hour yoga-thon to raise funds for Miracle For Mia, Inc. Sponsor a student or get sponsored and complete as many hours of yoga as you can!
Info: (631) 204-1219

If you would like to attend, but cannot you can always send donations to Miracle For Mia, Inc., or click the donate button on the right side of this page, or at www.miracleformia.com. Thank you everyone for your support!!!

Helmut Bathtub

Mia had a fun day yesterday. She got fitted for a helmet that will help the shape of her head. It's a little flat on one side where she favors laying on it. It was quite an experience to say the least. The team came in and put what looked like white pantyhose over her head and got to work. The pictures show the process better than anything I could ever write.

Weird monk hat-pantyhose-sock thingy.

Laying on the first bit of paper mache like cloth.

Mia, probably thinking, "What the heck are they doing to me now?!?"

The finished product. They then pulled this off her head and will take the mold and make some kind of helmet from it. We opted for the butterfly pattern on the helmet. We should have it by Thursday.

All dirtied up and ready for a bath!

Tubby time!

Clean and in bed at last!

Smilin'

Sleepin'

Blue eyes, blue skies

With some fresh blood and her new treatments Mia has had a burst of energy and been more awake and aware. We spoke to the nurse taking care of Mia this morning and she said she was wide awake and looking all around. Let's hope this progress continues!

Take that Llama! (sorry, inside joke)

Her eyes are turning a beautiful blue, though it's hard to see from the pictures.

Tough Week for a Tough Girl

Tuesday Mia had a spinal. The docs withdrew some fluid to test the lactic acid level in her spine. It was high, but consistent with the lactic level in her blood, which has also been going back up around the 6 and 7 range. They also started giving her a dose of thiamine daily as a form of treatment for the metabolic condition.

Wednesday they decided she needed the feeding tube put back in because she had been about 3 oz behind in her feeding for a couple of days. She now weight 7 lbs, 2 oz though! Hopefully she'll keep gaining.

Thursday she had a rest from any procedures. We spent some nice time with her and she seemed to be starting to focus in on mom and dad a little better. Her eyes are really starting to show a beautiful blue color as well. She also got a cute little pink bow in her hair.

Friday she has blood drawn in the morning for more testing, and then she had a blood transfusion at night, to replace all the blood that has been taken. She was very tired and hardly drank any formula from the bottle. Poor girl was wiped out. Hopefully with the fresh dose of blood she'll be a little revitalized.

Maybe the sun will shine today...

The clouds will blow away
Maybe I won’t feel so afraid
I will try to understand
Either way

Maybe the sun will shine today
The clouds will roll away
Maybe I won’t be so afraid
I will understand everything has its plan
Either way
- Jeff Tweedy, 2007

Nor'Easter Blog

The North East is getting pounded hard right now, but surprisingly it's a bit mild here today. Seemed worse yesterday. The Boston Marathon went on today as planned, despite talk of canceling due to weather.

Mia is doing pretty good. She's really been eating well and we're happy about that. She took over 3 oz for nurse Jessica this morning.

We hope to have more news tomorrow, for now it's just cuddle and feed.

Back Bay Blog

Sorry for the lack of posts this week. Truthfully there hasn't been a whole lot going on. We're still waiting for the genetic test results. Mia has been doing well, drinking more and more, and hasn't had need for a feeding tube.

The days have been long and we moved into a little short term apartment not far from the hospital in Boston's Back Bay area, so we've been busy. All the shuffling around has worn us down, so now hopefully we can settle in a bit. We are getting the sense that we may be going home soon. Once the genetic results are confirmed and a plan of treatment is set, we'll be ready to go. We're thinking by next weekend possibly.

Anyway that's about all the news that's fit to print. Here's some pics from the past week. So it goes.

Boston Day 8

No news today from the genetic department. Dr. Berry came by to say he hadn't heard anything from the lab where Mia's genetics were being tested. We should get news from the genetic test any day now. Hard to believe these tests take almost two months to complete but there it is.

Nurse Mary Ellen took out Mia's feeding tube today, because she didn't need it. She's been taking her full feedings and then some from the bottle. We think Mia likes having the tube out and is more eager to eat without it.

Today Mia found that her thumb was something fun to suck on. She was getting ready for a fresh bottle and found her thumb to tide her over until the bottle arrived.