Vision Quest

I hate when I pick the title before I write a word, especially one forcing memories of a bad 1980's movie featuring really bad acting and a shiny sweatsuit designed to make you sweat to make goal weight.  Whatever! 

There are two reasons for entitling today as such.  Andi had her eyes dilated, and the Dr. looked into her eyes and confirmed she doesn't have any coloboma.  She said that her nerves are small, but normal, and unless I felt there was a change in her eyesight, that she didn't need to see an eye Dr. again for several YEARS.  Yes, years.  So nice to hear that for a change.

The other part of the 'Vision Quest' is our desire to let Andi's rough start implore others to make positive changes, changes that perhaps Andi inspired.  I'm pleased to report someone very special to our Bean has given up smoking, seven weeks now!  As a former smoker, and a good one, I'm so proud that Andi is inspiring such a tough, but extremely positive, change in others.  If she wasn't zonked out, I'm sure she'd chatty cathy her praise on video.  The dilation is supposed to make her sleepy today, double hope this carries over through the night **please, please?**.  But, I'll get some video uploaded soon showing how proud she is!

So, a vision quest.  A play on words, rather than a major stretch on the definition.  Andi's vision is good, and her quest to make a difference is already occurring.  Yea Bean!

Six Months Milestone

It's been a long weekend, most of it a blur.  Andi survived her first Thanksgiving, part of it by sleeping, hands-folded, as if to say, "no more turkey, please".  The rest of the time, she stared at people's faces and absorbed people. 



This is going to be a very active week.  We have a social worker coming to evaluate us for services... why yes, it is a state agency - a mere two months later we get someone to come see us.  We're getting our flu shot tomorrow, as the Bean marks a milestone, 6 months old.  Then, we have an eye appointment, her four month eye check-up at six months... as this Dr. canceled her last appt. the morning of...  Tuesday is our big day though.  An echo cardiogram and a follow-up with her cardiologist, whom we're hoping will remove more med's.  I hope, I hope, I hope!

Other than that, we're working on tummy time, feeding, sitting up, turning to the left... and dealing with teething -- which seems to be getting worse.  Our sleep schedule seems to be in half-hour increments.  Every half hour, Andi wakes and stirs -- wanting her pacie, or having a bit of a meltdown.  Well, maybe more than 'a bit.' 

Tummy time has been getting progressively better, as we have more and more video of the Bean lifting and holding her head.  She still favors her right side, but, we feel she's getting stronger.  Slowly, but surely... we'll get there.

Six months old, although she's wearing the 3 months clothing size.  She seems to be at six months in certain aspects, but at 3 months in others. She's doing great and we're thrilled to be heading to Doernbecher's this week ... just to visit!!!  I hope she impresses these Doc's like she impresses us.  Hoping for another good week!

Iced Pacie, Iced Portland

It's icy outside, and we're glad not to be out in it.  Our appointments today were all canceled & rescheduled. Today, we worked with feeding and positioning.  Andi 'ate' some rice cereal made with some neocate, and had a couple bites of sweet potato.  She didn't eat much, but she definitely got some in her mouth -- and on her face, hands & outfit.  I tasted the sweet potato...ding dang, that's pretty yummie.  Guess we're all eating sweet potatoes for Thanksgiving this year.  Two feedings I held her on my lap - which makes it tougher on her, as she has to not only eat, but work to hold herself up... the other feeding, I placed her in her carseat and propped her head with towels. Think Santa might be bringing Andi a high chair!

We worked on positioning. I'm supposed to get Andi facing left as much as possible.  She needs to turn her head to the left - so it will stretch out the other shoulder and lengthen the muscles.  She's gotten a bit of flat head on the back right side, from laying down and facing the right so much.  So, we worked on sitting, holding positions, and different instances where she'd be stimulated to look to the left as much as possible.  It's tough... but, we've gotta do it.

Andi hasn't slept much the past two mornings.  Her sleep schedule is not predictible at all.  Right now she's in her swing and has fallen asleep.  Oh, I take that back, it was a two minute cat-nap.  Time for an iced pacie. A few minutes later, she's on her bed snoring.  Uh-Oh.  Hopefully that doesn't indicate another 4 a.m. early wake-up call.
Nah, I'm waking her in 20 minutes for another try with the apple sauce. We'll see how that goes, we've just gotta keep pushing!

Appointments and ... More Appointments

Today we went to a feeding clinic appointment, meeting with our feeding specialist, our dietary or nutrition specialist, and a pediatrician -- not our usual one.  We met with this trio of peeps to get a sense of where Andi is on her feeding, and what we need to work on.  She weighed in a 11 lbs, 5 oz's...which is up from last Monday's 11 lbs, 2.5 oz's.  We've gradually increased her overnight continuous feed, and now we're working on increasing her daytime bolus.  We got Andi to work not on bottling, but eating some sweet potato puree.  She did rather well, especially considering she did not like last night's apple sauce.  However, it was much better than bottling, that's for sure.  After our feeding clinic, we rushed over to the nurse's station for our first dose of Synagis.  A preventive shot to help protect Andi from RSV.

"Synagis is a prescription medication that is used to help prevent a serious lung disease caused by respiratory syncytial virus (RSV) in infants and children at high risk for severe lung disease from RSV. Over one million children have been given Synagis. It is given as a shot, usually in the thigh muscle, each month during the RSV season."

So... she has to do this shot once a month.  "Yippee!"  (yes, that's sarcasm for those that don't yet speak Anna...)  After the shot, we had to sit there for a 1/2 hour to make sure that Andi didn't have an adverse reaction to the shot.  She actually did great, and didn't cry all that long after the shot, thanks 'pacie'!   Our last appointment of the morning, was a meeting with a physical therapist.  The PT determined that Andi's left side of her neck has tight/short muscles and we need to work on stretching that side.  I have pictures of positions to sit her, hold her, prop her.... all run the risk of the dreaded leaky g-tube.  YEA!  (again, sarcasm, ...at its finest!)

When we got home, one of Andi's babysitters-in-training came over for a few hours for more training & a speck of relief for me.  Lucky for her, Andi was exhausted from a morning of therapy, and she slept most of the time her babysitter was here.  Lucky babysitter...

Andi was able to complete and send out her Happy Thanksgiving cards this weekend to her extra special Doctors & nurses.  Hopefully they all arrive in-time for the holiday.  We are so thankful for all the great care she has received, and she wants them to know how appreciative she is...

yeah... we still owe a bunch of thank you cards... but, Thanksgiving was a little more pressing deadline.  Then, we have to work on our Christmas "holiday" cards... in all our "copious free time."  **screaming laughter**

*trying to regroup from hysterical laughter.*

....wowza...

This weekend, I finally was able to take the past six months of Andi's paperwork and put together her medical binder, so... in case of emergency, there's a binder of medical information to accompany her wherever...

Tomorrow, the community health nurse is stopping in for a visit, and one of Andi's babysitters is coming for more hands-off training... the weather here is 'storm watch 2010' - so, we'll see how much of that actually works out. In the meantime, we have much to work on in-between everything else. 

Next week, we have a few more meetings.  One I'm most looking forward to is a check-up with her cardiologist.  I seriously hope he agrees that she's doing well, and decides to take her off some of these med's!  Andi's cradle cap is much better, with the help of a lot of olive oil.  Her dermatitis is still bad... but, a recovery in progress.  In the meantime, we have organic bananas puree, apples puree, and Andi's current favorite, sweet potato puree. Yummie, Yum, Yum!

Pooh & The Blazer Bean

Language Lessons

In the past six months, we've been meeting a ton of people, either in person or on the phone.  I don't often correct people, but ding-dang... it's time for a pronunciation lesson.

It's Andrea

And-DRE-a
not andria
Think of Dr. DRE (the rap mogul)... everyone knows him!!!

Repeat:  "And- DRE-a"

Capiche?

Lesson over.  However, 'Andi' or 'Andi Bean', 'Butter Bean', or 'Butterball' works too.

;0)

Beano In The Bumbo Seat

I put Andi in her bumbo seat, despite her not being able to totally hold her head on her own.  It's push time... and I'm going to push her to try and get her stronger, quicker.  That means tummy time, oral stimulation, bumbo seat, sitting up wherever/however.  As Mommy takes time to finally get back into the gym, it's Bean's workout time too.



She has a hat on because we're working on the cradle cap.  She has an olive oil treatment going on under that hat. 

Andi got her hearing aid mold done today.  Pretty interesting.  The fitting appt. is scheduled for early December.  Like most therapies, we will start out slowly.  Slowly exposing her to increased sound, with time limits.  We will start out with a 1/2 hour a day, then, build up to all day with the hearing aid.  However, when she lays on it, it will make a noise... so that will be an issue, since the G-Tube, and its leakage, forces her to either sleep on her back, or on her good ear -- the one that will get the hearing aid.  Also, her ear is so small, that we might have a problem keeping the hearing aid battery pack on the back of her ear.  If so - she might have to wear some sort of cap to keep it afixed to her head.  Big treat.  But, if it helps us propel the bean forward - then, so be it.  We do whatever we can to benefit the bean.

Productivity!

Long day. Going anywhere is such a production.  Our first stop, labs.  That was fun.  Then met with her Dr.

Weight:  11 lbs 2.5 oz's    (.49%)
Height:  2"  (8.58%)  [this is actually the same as last time, but we think that lady was generous with her measurement!]
Head Circumference: 15.75"  (4.05%)

She's charting well and he's totally pleased with her progress. She got her six month old shots (can give a bit early) and at the end of the month, she'll get her flu shot - so we can stop sweating getting that.  Andi did not respond well to her four month shots (fever 102) - so, we have to keep a close eye on her tonight.  Andi is now supposed to take her fluoride drops because she's getting to that age where her teeth are starting to come in. He said I need to work harder on her cradle cap, so, olive oil treatments twice a week now.  He also thinks she has dermatitis, for which we are now using hydrocortisone.  He mentioned he didn't think she needed to be on the lasix anymore, but didn't say to discontinue that one.  I believe he wants to wait to see what her cardiologist's assessment concludes.  We will be contacted by dietary in the next day or so, not only to reorder feed supplies, but also to readdress her weight gain and how to improve it. I'm hoping we can start working with some real food. We also met with the feeding specialist and although we didn't work on bottling/feeding, we got some great ideas on how to improve her neck strength, a plan to bottle her based on the less offensive, previous formula (Neocate) and ideas to work on oral stimulation. She also wants us referred to the physical therapist, to help her further.

Tomorrow, we go to get our ear mold for the hearing aid - and then just a quick meet & greet with the occupational therapist.  Maybe this lady can help Andi find a job, cuz ding-dang, we're going to need her to start working to pay for all this crap.  *insert exhausted chuckling here*  Andi Bean and I are beat... so we're heading over to friends house for dinner & a doggie playdate.  I just hope my head doesn't fall onto my dinner plate and I start snorring like Andi is right this minute.

Reflections from an early rising, chatty, growing Bean

The Bean had us up early today -- 3ish, 4ish, and at the 5ish hour with her screaming so the neighbors down the street could hear, I determined it was time to bring her upstairs.  Since coming upstairs and getting all dolled up for a morning of mirror gazing and pacie obsessing -- she's been a very happy Bean.  She's chatting it up, sucking on her hand, gazing at the morning news on TV, and reaching out for her Winnie The Pooh.  Despite Andi chatting it up, I tried to lay down and go back to sleep.  As I laid on the couch, my mind flashed back to our time up at Doernbecher's and all the people that helped get us here.  Four months of people that filled our days and nights, most of which made a lasting impression on us.  Well, the Bean probably doesn't remember them, but they definitely made a difference.  Andi has yet to complete her second wave of thank you cards, ...lazy lil' Bean, ya know?  But, our hope is to send proper thank you's around to the various groups in the hospital, with an update on how our lil' Bean is doing.  Given the scale of all the good that place has done for us, a simple 'thank you' card seems silly.  But in our four months there, the nurses, med students, and even the Doc's said that they see the kids when they're sick, but rarely get to see them when they're healthy and doing well.  I think the reward in what they do is probably seeing how much they help make a difference, and seeing a kid doing well.  I'd like them to see how much better our teething, chatty butter bean is doing today.

Next week should be interesting.  We have a check-up with our pediatrician, we meet with a feeding specialist, get our first hearing-aid mold, and have an inital meet & greet with an occupational therapist we will be working with as well.  Also, the hope of help is looking more promising as I have two people we're meeting with to possibly help us with the Bean.  I don't know how that is going to work, as one works and one goes to school, but least it's something!  I noticed yesterday that I've been walking around with four fingernails painted one-layer of red polish, with the remaining digits plain jane.  It's now day three of the partial manicure, and I have no idea when I'll get those remaining fingers done.  What's most odd about this scenario is how little I seem to care about it.

The Bean has since fallen asleep, and I'm wide awake thanks to my best friend these past few months, super strong coffee. Oh well, it's Friday and that means, after watching the Blazer game tonight, the Bean and I will likely make it an early night. Oh, I also just realized that I've failed to mention that the time has come for me to finally remove the 'newborn sleeper' from the Bean's pack-in-play - which is her downstairs bed.  She's grown too long and too big for it.  This is a huge milestone in my mind, as she used to be a tiny speck in her sleeper -- her head too small for the head-stabilizing pillow.  Yes, this is a big deal.  Here's a crackberry photo of the pack n' play after I assembled it.  The 'newborn sleeper' is the item on the right. All we need to say to that is, 'see ya later, sucka!'  ;0)

Giggle Bean

Here's a snippet of Bean video.

Beached

Why is it when you take a vacation, you often come back feeling even more tired than before you left?  Well, we stole away for a night at the beach. Saturday's weather stunk - with torrential rain blowing sideways as we got out to go to dinner, but Sunday's weather, wowza!

We went to our favorite place in Cannon Beach.  Our room was amazing, and our crab dinner was perfection.  However, we determined that next time, we're not going to go for just one night.  It's just too tiresome.

Andi never really saw the ocean, but she got to experience the wind, the mist, the road trip, although she slept through a lot of it, including our traditional breakfast at Camp 18.  It was incredible to travel with her though.  We don't really motor around town a lot yet, mainly because it's a lot of work.  When she was fussy somewhere, I simply walked her out of the room.  It worked, although it was a bit stressful.  We discussed starting to travel more, as we're itching to go new places and try out different things.  I'd like to get Andi used to traveling now, so that when we try to take her to restaurants as she grows, it's not a foreign concept to her and she knows how to behave. 

She did enjoy the view from the bed.

Here's Andi on Sunday, enjoying some sleepy time before we hit the road to come back to town.

Andi Bean, Madder Bean and the yellow dog outfit

sunshine & dry skin

I don't have much left to offer at this hour, but believe that Andi has crown cap and maybe a little eczema.  Both are harmless, and I believe to be the result of all the med's, especially the diuretics.  I massaged some olive oil onto her scalp and massaged it with a brush for 15 minutes and then shampooed it really well.  Seems a bit better.  Will do that a couple times a week I guess.  Her Dr., whom not only is on speed dial, but we're email buddies now... said to get a certain type of lotion, so we might have to venture out to the store at some point in the next day or two.  Today would've been the perfect day, as it was simply gorgeous, but, we never made it out.  Sadly, the walk probably would've done us both good.

Election Day Rash

It's election day.  All I really need to say about it is HALLELUJAH - all the smarmy TV ad's,  junk mail, and phone calls will finally cease!  Oh HAPPY Day!!!  I think I'm one of the few that feels it doesn't matter who gets elected, schtuff still ain't gonna get done because they've all forgotten life lessons learned in kindergarten class.  Politics give me a rash.  Democrat's, Republicans, Tea Baggers...whatever.  You all suck.  Therefore, I vote for Montgomery Brewster and the "None Of The Above" campaign.  (Brewster's Millions, 1985)

Andi Bean and I felt the need to get out of the house today.  So I took her to the office to see the guys.  The Bean was very good and we had fun getting out in the sunshine.  It was a beautiful day -- the fall colors are in their full glory.  The drive made me realize that it's really fall.  I have very little concept of the date, being my summer was spent at the hospital. It's bewildering to realize it's November, truly bizarre.

I'm excited about taking the cameras, Madder and the Bean to the beach.  I hope the weather holds, so we can get some great shots and show the Bean what I've been talking about for the past several months.  While enduring her first four months in the hospital, I tried to encourage her with promises of a trip to the beach.  I tried to explain the smell of the ocean, the sound of the waves crashing at the shore, the warm and soft sand under your feet, and the dreamy crab dinner we usually enjoy.  Yeah, pretty silly, but perhaps it was done to soothe my nerves more so.  I'm looking forward to it, and I'm sure Maddux is equally as excited...he just doesn't know it yet.

Well, my rash is in full bloom with all this news coverage of the election results.  Time for something much more liberating... the Blazer game and some Bean time.

drooling

The Bean got a great night sleep, starting around 8 p.m, however, I did not. We got up at 2:15, 3:20, 4:15, 5:05 and she'd declared herself done at 5:20, which means - time to get up and start eyeing herself in the mirror with her pacie.  So simple, and yet she finds it so rewarding.  She went back to sleep around 8:30, but then *insert mini violin* the phone rings, text msg's & emails ding... no rest for me.  Dragging indeed.

I'm thinking that teething discomfort has started. The Bean has been unpredictably fussy.  She sucking on her fist.  She drooling a bit.  But mainly, I've found that when I give her a cold pacie, she calms right down. 

The regional hearing specialists called today and they're pulling us back to them (instead of OHSU/Doernbecher's) for our hearing aid fitting, as they do all the follow-up hearing related therapy.  So, we now have an appt. in two weeks to see them.  They will take a sort-of playdough mold of her ear, and send that off to some place back east that will create the ear-piece portion of Andi's hearing aid.  This is the piece that will have to get a new mold every other month or so, as her ears grow.  They said they have loaner hearing aids too, so, I will only have to pay about $38. for this, at this juncture anyway. Yippie!

I think this will be the weekend we're finally getting out of town and heading to the beach. I'm sure the weather will be less than ideal, but, at least it will be a change of scenery. It's will be a great first road trip for the Bean, and exposing her to our beach trip tradition we started many, many years ago. Should be interesting, exhausting, and freeing.  I think we're all drooling.