The Latest on My Greatest...

So, Mara B has been having GI issues for months and months now.  To make a long story short, the general narrative arc since last year has been thus:  vomit, abdominal distention/pain/constipation, doctor/specialist appointment, test, blood draw, diagnosis (or not), procedure, new meds.  Repeat with frustrating frequency.  After positively identifying her as having a milk allergy, reflux, and gastroparesis (fancy name for slow emptying of the stomach), the underlying condition was finally diagnosed a few weeks ago.  She has a partial blockage/narrowing of a part of her intestine called the duodenum, which is next to her stomach.  Her official diagnosis is duodenal stenosis (or a web, we won't be quite sure which until they get all up in there and see it up close and personally).  It blocks solids from making their way through her intestines (they just come back up, oftentimes undigested) and this has hindered her growth, both physically and developmentally.  She's been off solids for a few weeks now (straight up purees and back on soy formula to pack on pounds...Girlfriend has been furious with us...we snuck her some turkey on Thanksgiving), and we've already seen vast improvements--she's trying to crawl, she's pulling up on things, gaining weight, her teeth and hair are growing more quickly (I swear, you can notice it!), and she's starting to speak more (we officially have two words, "No" and "stop."  These should surprise no one who has met my daughter.)

We went to the surgeon's on Friday morning and she was given the green light for surgery on Monday.  I never thought I'd be looking forward to my child having surgery, but I anticipate that most of her other issues will either be partially or completely alleviated after it is complete and she will continue to gain weight and improve her movement and speech.  The surgery itself is officially called "enteroenterostomy anastomosis of intestine" and takes about three hours.  The surgeon (who is professional, experienced, and very sweet--AND punctual AND he listened to me, really listened to me when I presented him with my ideas) said that the prep work takes awhile, compared to the actual surgery.  She'll be in the hospital for the rest of the week, with various tubes and IVs stuck in her (gross) but he said we should see a pretty rapid recovery after those first few days.  We're hoping solid foods for Christmas, otherwise we'll have to eat after she goes to sleep!  The reason for the hospital stay is to ensure that there is no infection and that she heals properly.  The procedure can be done laproscopically, but he said he thinks he can do a better job by making an incision.  Just as well, as this girl is already a crazy flirt so I'm going to try my best to keep her out of bikinis and a little abdominal scar should help with that.  She is in good hands and she is a trooper, so we're just anxious to have this over and done with!


Over the last nine or so months (which is half of her life at this point), my diva has been subjected to the following:
Visits to the allergist, gastroenterologist, ENT, audiologist, and pediatric surgeon.  A couple of trips to the ER (luckily, for nothing serious).  Stick tests and nasal swabs for allergins, about eight blood draws (and we're talking 2-4 vials of blood, people), an abdominal ultrasound, a gastric emptying MRI study (which involved drinking barium-laced milk and laying, strapped in, on a little bed for NINETY minutes while they took a picture of her stomach every minute--she was amazing), a fluroscopic X-ray series (this took place over the course of six hours and also involved drinking radioactive milk and getting pics taken every 30 minutes to an hour or so), an endoscopic biopsy (which involved sedation), tubes surgery, and a series of hearing tests.  In between all of this, she continued to have semi-regular trips to the opthamologist and 2-3 hours of therapy twice a week (on top of going to school and airing her grievances on a daily basis, making sure we all know who's boss).

I want to make people aware of all that not so that they pity her or us (or to justify my many absences from work! :) ), but so that you can understand that I really, truly mean it when I say how proud I am of my daughter.  She is a tiny little thing, but she is one tough cookie.  She yells and screams when you'd expect her to, but for the most part, she takes it all in stride.  I would not be as good about all of the poking, prodding, sticking, and testing she's had to go through.  I promised her (and myself, while cleaning up another set of vomit-studded sheets) that I would find out what was wrong and fix her and come Monday, we're going to do just that!!  I will be posting updates and am very excited to let you all know what my amazing little mama is doing!

On her 18-month birthday, I heard her laughing and turned around to see Aidan carefully placing this flower in her pontytail.  I snapped a pic as quickly as I could.  Too much cuteness to fully capture, I suppose.

As for my rascal boy, well, he is still his sister's biggest supporter.  He grandly announced one evening that Mara B is President--according to him, more people liked her ideas than "McRomney's," so "she's the number one baby and no baby is close to her".  He cheers her on as she tries to crawl, yells for me to come see if she's doing something new, reads books to her, and he always, always, finds a toy to let her play with.  He is incredible.  There is a sweetness and empathy to him that is innate and I know he's going to wonder where "his baby" is next week, but I've already been telling him we get to go visit her and bring presents to her room in the hospital.

On our way to the arboretum...bet you thought I was kidding about packing that Tickle Monster glove.  You should see what else is in that backpack!

My nature guide, pointing out fishies.

Treasures are everywhere!

Checking out the "toitles" aka turtles (p.s. Note the "explorer's vest" he picked out to wear--Pop-Pop's boy, to be sure!)

He is three, and a boy, so there is a fair amount of that coming out from time to time...like when I found her crying in his room, an upturned laundry basket holding her captive, or when she got a nice bruise on her eye because he lifted her onto his bed because, according to him, she "really, really wanted to snuggle"...except she launched herself off the bed moments later.  He can also recognize when she's going to throw up (which is uber-helpful on rides home from school) and during one of her hearing tests when we were in a booth and he was outside, he basically ran down her medical history to the woman performing the test, who was roaring laughing when we exited (she also congratulated me on my pregnancy and said she was sorry to hear that it made me feel sick, but how nice that the baby was coming right near my birthday!  I laughed and told her I was glad we didn't have any big family secrets, or else 'ole brown eyes would have spilled them!)  Keep in mind, this child has been to a good number of his sister's medical appointments, blood draws, and therapy sessions and nine times out of ten is really wonderfully behaved throughout.  He is amazing...and very protective.  There's a particular gent at the TCH blood lab who has been the recipient of my son's ire more than once for "stickin' my baby!"

Sibling derby

Oh, and lest we forget:
He raps.
If you listen carefully, you can hear a combination of two of his favorite musical influences, the Beastie Boys and the opening song of "The Lion King" (because yes, these lyrics are being spit, very loosely, to that melody):

We went down to Galveston today...we figured Mara B's not going to be out and about for a week, so best to get some fresh, salty air in her face and lungs (Girlfriend caught RSV a few weeks ago :( )while we can!  We ate fried oysters, shrimp, crab balls, and hush puppies, searched for sea treasures, got sandy and wet, and three out of the four of us slept on the ride home!  A day full of adventures, big and small! The diva was NOT happy about missing out on our seafood feast, so we promised her a return trip and all the fried oysters she can eat once she's back on solids!

My girl...she loves bling and cars!

My boys, searchin' for sea treasures!

L-U-V

You really can't help but smooch this one! (Both Mara AND Brian!)

Thanks to all of you who have been asking me about and following up on the amazing adventures of Mara's intestinal track!  Will let you all know how she's doing!  (And an early thanks to our Gigi and Grandma, who will once again be staying with us, helping out during the week--we couldn't do it without you!! XOXOXOXOOXOX)