4th Birthday Photo Session

4th Birthday Photo Session

Thursday, July 14, 2011

OT, EI and the housekeeper

I find it pretty pathetic that it takes a home visit from Andi's OT, for me to carve out 10 minutes to do a speck of housekeeping.  I don't mind Andi and I on the floor, covered in dog hair... but, asking others to endure such filth is another story.  It's not THAT bad, but, by the standards of a reformed clean freak, it's unacceptable.  I look around our family room, and it seems to be taken over by all things Bean.  Gone are the days of a coffee table. Now, we fashion a large towel over the area rug, that covers the hardwood floor.  An attempt for a soft cushion under the Bean.  Then, we're surrounded by toys.  Some play music, some dance, some are old style plastic blocks.  Basically, the whole room is Andi's play area, therapy area, and it looks like Babies 'R Us threw up a bunch of crap all over the room.  It's insane.

Andi has figured out how to get around the room - by rolling, and sadly, she gravitates to the TV and TV stand.  At some point, we really need to put the TV on the wall and get that hazard out of her reach.

Our OT brought us a new bag of books.  It's a program they have where they rotate a bag of 3 or 4 age-appropriate books to the different families they work with.  Without this program, some of the kids don't get exposed to books.  As someone who has worked in publishing sales for 16 years now, it baffles me to think of families not having books. I have some books for Andi, but even those get stale after awhile.  I've found this program to be very rewarding for us too, despite our little library. I've already pledged to donate a lot of our books to the program, to give them more books to rotate.  So far, my favorite books are some "hear & feel" books.  They have sound chips in them, so when you push on the button, it makes a sound and the entire book vibrates.  These books have been a lot of fun because it also is great for kids like Andi who have some level of hearing impairment. The vibration of the book helps keep her engaged.  I was never interested in the kids books we've sold until Andi.  But now, I'm finding myself the biggest critic of them!  Getting back to Early Intervention... this program is amazing. I honestly wrote a big tribute to it yesterday, and felt I got a little too political - so I decided to cut it completely.  Here's a snippet of what EI is for us:

The Oregon Department of Education contracts with local agencies to provide a statewide system of free services for young children with developmental delays and disabilities and their families, including:
  • Early Intervention (EI)--Individually designed services for children birth to three and support for parents to enhance children's physical, cognitive, communication, social or emotional and/or adaptive development;
  • Early Childhood Special Education (ECSE)--Specially designed instruction for children ages 3 to the age of public school eligibility including physical, speech/language, mobility, social or emotional, and others.

So, EI is how we get our OT and an audiologist coming to our house once a week to work with Andi.  The house visits are the best because it engages Andi in her environment where she's more likely to do well. It also gives us a break from the once ridiculous amounts of outside appointments we used to keep. In addition to bringing us books, they've lent us toys or "signing time" videos.  It's amazing to me the variety of stuff they expose us to, and allow us to try.  For example, one of the toys Andi really liked at her PT appointment is a big plastic piggy bank with these huge coins.  I've looked at three different stores to find it and haven't yet found.  I was telling our OT about it yesterday and she said she had one in the car we could borrow for a week.  She also told me where to find it. Andi's playing with it now, and almost as happy as she can be playing solo during her afternoon feed.  So, EI, has been a wonderful program that we have definitely benefited from. If you have extra kids books or toys laying around, perhaps a program like EI could better utilize your stuff, instead of Goodwill, and some of the more well-funded charities or organizations.  There are a lot of programs out there that are constantly threatened with budget cuts, and yet they are the ones that do so much for kids that have to fight harder than most.  Perhaps they could benefit more from some simple offerings from us all.  Everyone is struggling, but those lesser known programs, probably could really use a light shining down on all the good they do for us all, especially 'da baby Bean!  So, do some housekeeping yourself and really consider giving your unwanted or unused items to a program like Early Intervention.  And, no, they don't want your dust bunnies chock full of dog hair.  I've already tried to give them mine!

Saturday, July 9, 2011

"mamamama"

Today, in Andi Bean jibberish fashion, she uttered throughout the day, "Mamamamamammaa"    I used praise, clapping, all the things to instill a positive response.  Everytime I asked her to call me "MaMa", she uttered, "da da".  Defeated. I regrouped, and pressed on.  She still hasn't made the difference between "Dad" and everything being "dada" or "dogga" ... but for a kid who is hearing deficient... without her aid in 99.8% of the time... to hear her babble a new consonant, 'M' is huge in my book.  In addition to "MaMa" there's important words like "Maddux" to master!  Andi is so in love with the dog "dogga" that she gets super excited when he is near - to the celebrity level of David Beckham, and he gets a bit nervous.  The "M"anic is sound asleep with her dog-pacie (froggie's substitute).  Tomorrow, we continue to work on the correlation between 'mammaama' and 'MaMa' ... all in due time.

Friday, July 8, 2011

Zoo Visit

Another wild Friday night, and my partner-in-crime is konked out at 8:30 p.m.   I had her in her bumbo chair for a good 10-20 minutes.  I entertained her with everything I could... and had to pull her out because not only was her outfit soaked.  Her bare leg was coated with Neocate that escaped the g-tube.  Forget the jasmine plants on the front porch to remind me of New Orleans, it's the soothing scent of Neocate that entices all.  I should bottle & sell this junk!  Call it Neocrack!  "Once you get a whiff, you're addicted!"

In any case, since my entertainment is snoozing, I felt it was high time I sort through some of the photos/videos we took at the zoo, a few weekends ago.
These are the basic highlights.




Wednesday, July 6, 2011

Feeding Clinic, part two

Yesterday, we took the Bean to the feeding clinic up at OHSU.  It was a follow-up to the swallow study and progress report.  Andi weighed in at 14 lbs, 11.8 oz's., which is an increase from her last weigh-in back in June (14 # 7.5 oz)  Not as much as I would've hoped, but still an good jump since they saw her last on 5/3/11.  They were rather impressed, actually.

Andi's swallow study was explained in English, not the medical jargon we found in the report.  Made understanding where she is a lot easier, and caused a little light bulb to turn on above my head.

Andi's swallow study shows that she has silent aspiration with thin liquids, like water, and pudding thick liquids.  Aspiration is when the parts in the throat aren't coordinating right to send the food or drink down the stomach pipe, rather than to the air pipe.  So, her swallow isn't yet protecting her airways, and the silent part is that she isn't showing signs of the stuff going the wrong way, such as coughing & trying to clear the throat.  So... we have to keep on the with the purees and get her coordinating and used to eating orally.  Basically, for the past year she hasn't had to do eat and drink by mouth, so it's weak.  However, a big ol' bright light bulb went off during our meeting, because of something I did, actually.  When we went to the swallow study, I brought some food, spoon, her nosey cup and her straw.  I mentioned that she can take fluids by the straw, and so we did 3 out of 4 fluids by straw, rather than by her nosey cup.  In hindsight, I never should have offered that, and had her do her study using the nosey cup, which is what we had been working on.  Although Andi can suck fluid up the straw, she'd only done in a handful of times.  Fluid coming up a straw is faster and less controllable than taking stuff by cup, and that lack of control gives a kid with swallow coordination issues, less time to prepare to for fluid.  Also, you get more fluid in with the straw, so, in addition to having less time to coordinate the swallow, you're taking in even more fluid to process.  Basically, as I see it, by doing 3 out of 4 liquids by straw, set Andi up to fail.  The fourth was done by spoon.  Now, Andi does have coordination issues, weakness, and as I see it, it's due to her not doing it... but, we've been working on it diligently for the past month or two. I think by doing, with more time, Andi will be doing better.  Wait, I don't think that, I know it.

Today, for lunch, Andi had some sweet potatoes with a little bit of cinnamon, and then a Neocate cocktail by g-tube.  I was able to capture a picture of how lovely that looks when it leaks out the g-tube.
Anyone want to do our laundry?  There's a common saying, 'don't cry over spilled milk', where in our reality, you cry when it's spilled milk vented out of her stomach.  It stinks, AND it is lost calories.

There has apparently been talk on how to resolve our leaky g-tube issues.  The Dr. yesterday said that one option is to pull this one and do the surgery again in a different spot.  My response, "two holes in her stomach?"  (One would be closed, but still...)  Uhm, no.  At least though this was the first suggestion of a solution, to which in my opinion, there is no viable solution other than getting her off of it altogether.  That's what I'm voting for... and hoping for.

Thursday, June 30, 2011

PT Snoozefest!

Today, Andi went to see the PT at Kaiser, and had a good solid hour workout.  We were introduced to a few new postures to try to get Andi's neck, shoulder, hip, and leg strength up.  The funny thing is that at the end of the appointment I put Andi in her stroller and she promptly fell asleep.  When we got back to the car, she was moved into her car seat, still snoozing.  Now, we've been home for several hours, she's still in the car seat, and she's still snoring up a storm.  Oops, I just turned on her g-tube feed pump, and she awoke.  Oh, she's going back to sleep.  PT wore her out! We have a month to work on these new exercises, and OT is coming over in two weeks.  Hopefully, we can make more progress utilizing both therapists.  It was November 2010 when Andi saw this PT last.  She had read up on Andi's file and got caught up on all things Bean.  She said she was surprised by Andi's progress given all the many obstacles she has read about.  She was impressed. Well, she should be!  Andi is a rock star!


Wednesday, June 29, 2011

more Bean photos!

I've taken some more photos of Andi these past several days.  We took her to the zoo for the first time this past weekend, but I haven't uploaded those images yet.  In the meantime, here are some recent photos of my camera-loving Bean.

There's a local photographer that wants to put together a book of 'Portland Kids' to support Doernbecher's Children's Hospital.  I wrote in to submit Andi, minus the $100. contribution, and haven't yet heard a word.  Shocker! I would think that stories of kids that actually live, or have lived, in DCH would be more intriguing, than pictures of healthy kids that can't even relate to life in a children's hospital.  But whom am I to suggest that this project is wrong, the benefit is right.  

Now I'll step off my soapbox, and offer up pictures of the cutest Bean on the planet!

Start Making A Reader Today!

Working on my laptop, just like Mommy & Daddy!

Sitting in my bumbo chair!

Wild summer evening, outside!

"belly, belly, belly, belly!"  Daddy makes me laugh!


Tuesday, June 28, 2011

Sunday Parkways 2010 -vs- 2011

This past weekend was the annual North Portland edition of 'Sunday Parkways!'  An event we look forward to all year long.  Sunday Parkways is a planned route of streets & parks within a section of town that they close off to car traffic. The streets are open to bikes, walkers, joggers, skateboarders, even saw some old style roller skates, and in a previous year, a unicycle.  It's one of those fun events that make you not only get to see the neighborhoods, and the neighborhood parks, but enable you to see the glorious people of Portland for whom the expression, 'Keep Portland Weird!' was written about.  The people-watching is tres fabu!  At each park they have activities, food, music, vendors - information, neighborhood association, etc.  And on the route in between parks, often you have lil' entrepreneur's-in-training selling lemonade from anywhere from $.25 to $1.00, and my favorite, Jake's Yearly Toy Sale.  That kid was cleaning house and cleaning wallets.  This year, we took Andi in our new bike trailer and she slept most of the way.  After two hours of that, we switched to the jogging stroller and walked a good chunk of the 8-mile route, until she fussed and then projectile puked all over Daddy!  Then, it was time to go home! 

In 2010, Andi, Ginga & I went across the street to our park, which is one of the six parks included, and sat in the shade with our sleeping Bean.  She had recently come home from her first month in the hospital, and was just about to go back - for what, I honestly don't remember which problem.  I figured a good ol' photo comparison will shut up the whiny voice in my head, as a visual of not where she is on the growth chart -- which really isn't a fair assessment of our girl, but, a visual on how far she's come in this past year.



Sunday Parkways 2010
 

Sunday Parkways 2011
  Here are a few more comparison photos, albeit, you can't really see her size under the blanket.


Sunday Parkways 2010
 
Sunday Parkways 2011



Stroller - Sunday Parkways 2011
Standing at Sunday Parkways 2011
After Sunday Parkways, we decided to get cleaned up and go out to dinner. Since the weather was shockingly nice, we decided on a place on the river, so we could continue to enjoy the outdoors. Andi was pretty beat from her super charged day o' fun, and slept through the entire meal.

Passed Out!


Passed Out, but with my pacie!