Bebe, "Warrior Princess": ..wow, TONS AND TONS to update!!!!

..okay, wow..i have so much to update on, this may take installments!

..where do i even start..bebe is literally amazing. we just celebrated her 3rd birthday & we count that an absolute miracle..as some of you know (and i may have even mentioned on here, before)..we have heard that nearly 30% of children diagnosed with the syndrome that bebe has been diagnosed with never see their 2nd birthday..and here we are at the 3rd one & going strong..it's probably easiest to compartmentalize all her accomplishments into zones, so here we go..

GROSS MOTOR: we have a walker----no, make that a RUNNER! b has began to walk and even run. she began to walk about a year ago and let me tell you, she is quite mobile & into EVERYTHING!!!! we are still working on the transition from sitting to standing, so if she falls down, she will just look at us to help her stand back up. she actually recently started to crawl (who says you have to crawl before you walk---not bebe)? she rolls & crawls when she falls down & even recently mastered the transition from laying to sitting (yaaaaay!). we are working with her physical therapist now on going up & down stairs..which b is doing great at with help), also stepping over things & squatting. we are so proud of her for learning to bend over to get things, since there was months & months of a walking child who would drop all her toys & then stand there & look at you like "i'm out of toys & can't get those."

FINE MOTOR: we are still really focusing on getting bebe to feed herself. we remain on a soft/blended diet since our ability to chew is still being harnessed. drinking is still a bit of a struggle for us, since the best way to get her to drink is by bottle or syringe. she still does pediasure/heavy cream mixture by a bottle & we are trying several ways to get her to drink other liquids. i think our next step may be thick-it to help with juices & water. for those of you who don't know what that is, it is a powder that makes things like juice & water a consistency like honey or nectar (depending on the amount used). so, it gives her a few extra seconds to figure out how to lift that tongue and push the fluid down her throat (crazy what we take for granted, like automatically doing all that). anyways, so hopefully that may help.

SPEECH: bebe is learning more signs to help her communicate with us her needs & wishes. she signs: more, eat/food/bites, all done, play, night night and dirty (for a stinky diaper---as if we need her to announce that, hahaha). we are still working on: pain, yes, no, please & thank you. we are about to start some new techniques to try and help her get used to her mouth & jaw being in different positions. b's mouth & jaw is formed differently, so it is most comfortable sitting just the way it is. so, we are going to have to get her a little out of her comfort zone. she is noticing her tongue more, which is awesome, but we are still working on really moving it around & using it to make sounds. she is babbling ALOT and says things like" hi, bye & dada. she is definitely imitating more, like making general noised with the same inflection as us, but her lips & tongue don't move so much, so it is her own little version of that word or phrase. she is also doing cute things like throwing her hands on her head when i say "oy vey", throwing her hands in the air when i say "roll tide", humming/babble singing & doing hand motions to childrens songs, etc. she is so smart & i really feel like she is learning to be the articulate little girl that is inside of her. i know she will be so glad when she has the understanding to clearly communicate what she is thinking-----bless us!

GENERAL COGNITIVE: therapists would have her at about a 12-15 month cognitive ability at this point. we are still working on following instructions and things like that. so, in public places, i don't feel comfortable letting her roam, since she is not quite at a place where she would follow my instructions. but, even still, that is progress from where she was before, so we count it as a victory. she'll get there---in her own precious time---she'll get there.

GROWTH: b weighs almost 19 lbs & is almost 33 inches tall. so, she is still a bitty little thing. her clothes still range all over the place, but usually we have to get 12-18 months clothes for the overall length, since she is so long. but then we generally have to take things in or alter them to be slimmer, since she is so lean.

MEDICAL: oh wow...let's see. let's just start head to toe, that is easiest for me to think.
NEUROLOGIST-she had her first seizure in february of this year. we were bummed, because we had made it through the first 2 1/2 years without seizures. we thought we were in the clear. that first seizure was a febrile seizure, due to a spiking fever. they did not feel it was anything to worry about, since average kids have febrile seizures. within that week, that spiking fever turned out to be RSV (first season without synagis & she gets it!). after watching her with the RSV, i was so grateful for all that terrible hard time on synagis. i know before her heart surgery, it absolutely saw how could have taken my baby's life. we were in the hospital for a few days with that. then about a week later, she started having seizures, but not associated with any fever. i can safely say this was one of my breaking points. she was seizing almost constant for what seemed like forever. i broke down in the hallway of the ER, because the reality of the possibility of losing my child hit me like a ton of bricks. i had heard that a major culprit of children who die with Wolf Hirschhorn Syndrome was constant seizures. and all that ran through my head was "dear God, please let this not be the beginning of the end....please don't take my child.....please." i thought my heart had been ripped out of my chest and trampled on the ground. in fact, i couldn't even make my normal "call the grandparents" phone calls, because i literally was a complete wreck. that admission, i didn't really want to see anyone or talk to anyone. it was the reality check of the seriousness of the complications with the syndrome. i still can't really type about it without getting emotional. but the Lord's power is made perfect in my weakness & my oh my was i weak. He took great care of her & the doctors were all wonderful. she is now on a daily medication & is doing terrific. we had one additional seizure, but it was a febrile seizure, a few weeks after that. it actually was her fever spiking due to another terrible respiratory virus that again landed us impatient. the doctors explained it as RSV's horrible big brother on steroids. our little one was TERRIBLY ill with fevers in the 105's. she spent a few days in the critical care unit, thankfully under very watchful care of the amazing staff. and in a weird way, it was nice that i got to go home & sleep at night. the Lord is so good to me to grant me sleep even in the midst of those times. so, that is where we are----ohhhh, and i can't remember if i mentioned it or not, but they can't exactly find that pesky cyst they had found in her brain when she was born---it just, didn't really show up on her MRI. (laughs) ohhh, Lord, you are so funny to just make things disappear.
EAR, NOSE & THROAT-we had chronic ear infections, so like many other little ones---we had to get tubes in our ears. it was actually almost humorous the day of surgery. we were in the little waiting room & the nurse comes in all concerned & so sweet. she kept telling us how everything is going to be okay & there is nothing to be worried about & how it is always harder for the parents than the child. i had to crack up when she left the room. i looked at chad & said, yeah----she has no idea what we've been through, bless her heart. she was so sweet & it wasn't that i was completely un-concerned for my child, but after open-heart surgery when they say things like "so we open her chest, stop her heart from beating, hook her up to a machine that does that for her, fix the problems & then just start the heart back", i'll be honest----a gas mask & tubes in the ears doesn't really effect me so much.
ENDOCRINOLOGY-we started seeing an endocrinologist to monitor her growth & to build a relationship for the possible future of growth hormones. i have seen some families who have had children with Wolf Hirshhorn Syndrome who have had success with growth hormones. so, we wanted to hit the ground running. at her last visit (yesterday), the crna explained that an average child b's age grows at a rate on the scale of about a 5 (don't ask me exactly, it's like a number associated to the rate or something). well, my amazing bebe's rate was on the scale at 13. whaaaat, yeah, she beat her peers at the rate of growth. she grew 2.5 inches by their measurements in only six months, and put on about a pound. now, she did have that bout of turmoil you read earlier with all the sicknesses---so, she lost about 2.5 lbs & then recovered it & another lb. i think that is awesome! we are still years away from even considering growth hormones, but i am still bang up proud of my little one.
CARDIOLOGY-they have told us she is healthy on their end & we just have to go in a couple a years to let them take a look at her again.
GASTROENTEROLOGY-the syndrome seems to effect her growth in a dramatic way..she doesn't absorb calories like the average person..so, it takes more calories for a slower return..so, we are boosting everything she eats with things like extra virgin olive oil, heavy cream, butter, etc. when we can afford it, we also use products call duocal (a powdered calorie) & scandishake (sort of like carnation instant breakfast x 10). i was telling her endo-doctor how i've also switched to feeding her about every 2 to 3 hours & she said "wow, that's a full time job, mom". it's nice when people notice. i told her how preparing, hand feeding & cleaning up seemed to take up so much of my time. i explained it's like the chaos of an active 3 year old with the high-maintance of a newborn. good thing my lil munchkin is worth the constant work. and i know there are lots of mommies & daddies & caretakers that are WAAAAAY busier than i am, so i am grateful. she is still doing pediasure, rather than whole milk, because it is more complete. wish all this special stuff wasn't so dang expensive!
NEPHROLOGY-by ultrasound & blood work, it appears that b's kidneys were not formed as completely as an average child. so, this causes a lower function of her kidneys. we are monitored by the nephrologist, but overall, she is looking great. at last report (about 2 weeks ago), her kidneys had grown with her & her blood work was looking better. yay!
ORTHOPEDIC-bebe was fitted for some custom ankle braces to help her with her intense overpronation. that is where her feet roll in. b's was so significant that at times her inner ankle would almost be on the ground. so, the braces help to align her feet correctly and support her arch. she doesn't even notice them now & does great using them. they are quite minimal & have worked great. i can even tell when she isn't wearing them, her stance is better.
PEDIATRIC-we go for her annual check up next week. we so adore her pediatrician. thankfully, we haven't had to visit much lately, so she will be so excited to see bebe. she is just as proud of her as we are. i think bebe may just be one of her favs---just sayin.

PHEEEW!!!! that is the basic (hahahahahaha) update on the sweet child..but more than anything, after all these "facts" and such..i must say how extremely proud i am of that child. she is the toughest & most determined soul i know. doctors put limitations, she has blasted them. i think she will continue to do that & i think she may just change statistics along the way. we have high expectations of her & don't let her quit...but she puts in more heart, soul & effort than we could even expect from a 3 year old. man, has God got a story He is writing in her & through her. i'm so privileged to be a part of it.

..k, that was alot, so i am going to shut up now. i really am going to try and be more on top of this!!! *laughs*

b's18 month pictures: