Making the new 'normal' normal.

For the past 3 months my mind has been running at top speed… mL, feeding tubes, nitric oxide, granulation, timers, pumps, rate/hr, adoption post-visits, physical therapy, occupational therapy, stretching techniques, sensory input skills, feeding therapy, aspirating vs. normal cough, new hair care routine, appointment, appointment, mL, 15 oz of water, extensions, bolus, night feeds, no night feeds, meds, meds, appointment, appointment, vaccine, meds, appointment, etc.

Anything outside of these parameters takes a great deal of effort to address… laundry, checking my email, dusting the house, eating breakfast… these things are barely on my radar and I have to really concentrate to put them there.  I HOPE we are nearing a stage where things settle… and the “normal” becomes “normal.” 

You may remember how well we were doing with Abi’sfeeding… we still are… however the past few days she has vomited a number of times.  The nutritionist feels it’s due to a virus (even though she feels great and has no fever) since she had been tolerating the new routine/formula for almost a week before vomiting started… I want to believe that’s the case since the new routine was rocking my world.  (In a good way.)  Abi’s pediatrician wasn’t very concerned yesterday, but if it continues she wants to address it- since Abi can’t afford to miss many calories. Sooo, I’m on day 2 of pedialyte and just a little formula… we’ll see how that goes.  Hopefully it will go great and the virus or whatever is gone!  Please, Lord?

Right now Abi should be napping, but I see on the monitor that she’s smiling, staring at her stuffed animals and “talking.”  Oh this girl’s a rock star.

Being behind on laundry, emails, etc. really messes with my mojo. I like to be a super organized, ‘I’ve got pretty-much-everything-in-control’ type of gal and having two weeks’ worth of laundry on my bedroom floor is a good way to make me feel “off.” Due to the vomiting I was able to avoid going to the hospital for our nutrition appointment today and instead had the meeting over the phone… this means I have all day to snuggle up… perhaps order Dominos- again- (Don’t judge- I eat all organic MOST of the time- can you tell I’m arguing with myself here?) and get things IN ORDER.  Step 1: Laundry.  Step 2: Check / organize email. I literally have 2,276 emails in my inbox.  Oh wow.  

BY the end of today I hope to have a vomit free baby, an empty hamper, and an organized inbox… It’s an ambitious dream...

But, here we go. 

mae

PS: There's a very special little boy on my radar who needs a family!  Considering adoption? Know somebody who is?  I'll be posting about him ASAP- so check back soon to learn more about this precious child!!

It's a Parrr-taaayyy & You're Invited: Throwback Thursday Style.

Hi Friends!

I. AM. SOO EXCITED to announce a collaborative link-up party between me and the amazing Mrs. Thriftary... After months of ooohing-and-awwwing (and laughing hysterically) at people's throwback Thursday photos on Instagram, we wanted to bring the party into the blogging world.  We want to know more than just the photo... give us a caption... give us a funny story... Anything that makes us know more about the incriminating photo you so bravely chose to share.

Sooo... next Thursday we're inviting all of our blogging friends (that's you) to link-up and share your amazing Throwback Thursday photos.We really can't wait to see what you bring to the party!

I'll give you a taste of what's to come... Reluctantly...

Yeah, that just happened. 

In an ironic twist, it actually took a lot of heart to pull this one off. 

I'm sure Dorothy and the Scarecrow and all the other members of my trick-or-treating party are still scarred.  Sorry guys.  I see the date on the side says '98... Which means I was 14.  Oh my.  

Join us next Thursday won't you?? Let's have a good time laughing at with each other. 

Alright- See you next week!!! Can't wait friends!

mae

PS- Mrs. Thriftary has a pretty outstanding childhood photo and a VLOG on her post today describing the party in more detail.  Go watch it and then get to digging through those albums!

I Would Gain 40 pounds in 3 months...

... if what just happened to Abi's body happened to mine. (Sidenote: just in case you've been saying 'Abby' in your head... that's not how we say it. Abi rhymes with baby.  Thus the reason we say, "Baby Abi" so much.. it rhymes... and rhymes are fun. okay, PHEW: glad we got that over with.) Alright- back to gaining weight.  If I were Abi I would have gained 40 pounds in the last three months. The child has gained 5 pounds since arriving home, which is a substantial percentage of her entire body weight. She came home as a "newborn", couldn't hold her head up, she had no trunk muscles, she kept her legs and arms tightly bent in towards her body, she didn't respond to much other than touch and music (no eye contact, no looking towards a toy, etc.) and she was so very malnourished.  At the height of an average American 2 year old, she weighed less than 15 pounds.  ALL of her ribs were visible, she had no belly, her ankle and her thigh were about the same size, and her knee was the largest part of her leg...soo skinny... and now, NOW I have the privilege of holding a full blown TODDLER.  Last night Sean and I just stared at her... we COULD NOT believe how much she had grown in such a short amount of time.

This was her in October at our hotel in Africa:

And this is her now. I mean just look at those cheeks.

 She's DOING so much more too.  She's gained much more control of her head, she is engaging her trunk muscles and trying to sit on her own, she rolled completely over the other day at my mom's house, she's kicking up a storm, she's keeping her arms and legs straight or at midline most of the time (VERY big deal) she's touching her face, she's recognizing toys and moving towards them, she looks at whoever is talking to her, occasionally she mimics sounds you make, she opens and closes her hands, she recognizes her name, she looks at pictures of a book while you read it, and she RESPONDS to music.  I put that in caps because she REALLY responds to music. She doesn't love all music though. She has her favorites and her not-so-favorites.   Beyonce and Sean being her top 2. Here she is watching Beyonce sing at the inauguration Monday.  Pure bliss.

She'll hear the first chord of one of her favorite songs (even if I haven't played that particular song for weeks) and start laughing or kicking. No need to wait until the chorus, she knows it right away. During American Idol the other night she legitimately cried every time someone who was bad sang and as soon as they stopped singing she stopped crying.  Then a talented vocalist would begin singing and she would start smiling and laughing.  She's got some discerning taste. The other night (knowing how much she'd love it) I took her to the studio Sean was recording at.  The second she heard her daddy's voice coming through the speakers she was in heaven.

All this to say, MAJOR things are happening in this house.  The eye doctor even said she doesn't need glasses right now... This is the same child whom we thought might be completely blind last December.  Miracles, miracles, miracles. 

And now, I must go feed my 20 lb babe some lunch.  Without the pump. So blessed.

Norman- my 25 year old cat.

When I was 3 years old my mom got this cat.

He was as cute as he was mean.  He lived at my mom's art studio and when you came in he would hide behind shelves and then jump out at you last second and attack. We named him Norman.

The older he got the more ornery he got.  If you tried to kiss him he did this...

That's my mama.

He was moody... and entertaining. 

Somehow I taught Norman to bite you on the nose if you got in his face.  It was a pretty fun past time.  I often told friends to give him a kiss on the face just to watch them get nipped on the nose.  It was mean... but hilarious.

As an adult cat he developed an odd problem in his tail... he would attack it.  Not chase it, not play with it... chew it raw.  My mom (being a devoted and loyal animal owner) took him to a university hours away to have him treated.  Eventually the problem stopped.

Then, he lived another year... and another year... and a-n-o-t-h-e-r year.  He is now 25 years old.

(and the reader gasps.)

Those "scales" aren't due to neglect... they're simply an inevitable byproduct of being ancient.  He walks with a sideways stiff limp... he announces himself at the front door whenever he wants to come inside... and he has his very own heated home in the garage that he can retreat to if he wishes... Anyone who has ever met Norman doesn't forget him.  He is from the ice age.  He represents a different era.  He is officially 117 in human years.  Not kidding.  Just ask calculatorcat.com.  To my friends who love their cats, he represents a beautiful future... to my friends who aren't crazy fond of their feline friends... he represents a depressing next few decades.  For me, he's a legend.  Cheers to you Norman and may you live to see another year pass!

 We're rooting for ya.

mae

Feeding Freedom!!

Last week was a very, VERY happy week because we got our first feed in through a syringe and not the pump.  This means I can now attach the feeding tube to Abiella's button on her stomach and insert a syringe full of formula.  Boom. Easy.  Fast.  The pump, (which allowed the food to insert her belly at a slower rate) took 3 times as long and required bags, an IV pole, etc, etc, etc... Long story short, the first successful feed with the syringe was a HUGE deal in our house. Like a REALLY huge deal.

Then on Thursday, Abi's nutritionist gave us a higher calorie formula to start using. She suggested we devote three days to transition Abi to the new food while simultaneously increasing her day feeds and getting her off of the night feeds. A pretty tall (but exciting) order. We decided the weekend was a perfect time to do this and other than two minor vomiting episodes it went really well...

Saturday we needed to have a pretty low-key day while Abi's stomach got used to the new situation... So, it was deemed a "palette day."  Few things are better than a good palette. Sidenote: I've discovered that some of my friends didn't use this term growing up. I'm not talking about a wooden palette.  I'm talking about a stack of blankets and cozy pillows that you lay on in the middle of a living room floor... we used to make them during sleepovers, or if you were sick and wanted to be in the living room by the fire, or if you just wanted to stretch out for a Saturday in front of the TV.  Pallets are THE. BEST. and the best place to take a nap. Hands down.

By the afternoon, Abi was feeling good and we decided to take advantage of the beautiful weather.

I was getting serious cabin fever, so 55 degrees and sunny was nothing short of a miracle. (It's now 28 degrees as I type this... warm weather come back!)

By Saturday night we had successfully increased all of Abiella's day feeds, so she went to bed withOUT the pump. Oh my gosh- what a feeling.  We just tucked her into bed... no cord attached to her belly... no worries she would roll over and snap the entire button out of her stomach... no 30 minutes setting up the pump, no cleaning the bag, no priming the tubes... just a book, prayers, and tucking her in.  SO. NICE.

Oh sweet freedom!  As I type this I'm staring at the massive IV pole hanging beside her bed... I think I'll move that sucker to the garage today.  Forward motion!  Woohoo!!!

mae

PS- Abiella fell asleep at 9:30 last night!!! Woohoo!!!  (She had been falling asleep near 2 in the morning...)  This did mean, however, that she woke up at 4am - but who doesn't want a little Shel Silverstein and double rainbows in your life before sunrise? I'll take it.

Alright friends- how was your weekend??