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.