4th Birthday Photo Session

4th Birthday Photo Session

Thursday, July 21, 2011

Jive Turkey!

I am more than pleased to announce that Andi Bean now weighs a whooping 15 pounds, 2.5 ounces!  She's nearing the Butterball status I've been aiming for... It's amazing how incredibly difficult it has been in almost 14 months, to get her from 5.6 pounds, to 15.2 pounds.  Reeedonkulous!!!! 

Today, we saw the g-tube surgeon, as the feeding clinic pushed that leak back at him and said, *insert sassy voice here*, 'nuh-uh, this ain't going to fly, turkey!'  So, he checked the device, again, and blew up the balloon to 6 ml.  He wanted me to do a bolus and try to recreate what we'd typically experience.  I pointed out that her bolus takes an hour.  He said, 'speed it up, or you can certainly stay here that long'.  I sped it up, then, thinking about it more, I sped it up again.  I took her normal volume and delivered it in half the time.  Wowza.  In any case, I sat her up and it leaked.  He blew up the balloon to 7 ml, and had me lay her at an angle, it didn't leak.  So, he suggested that we relook at positioning for feeds.  I pointed out that feeding clinic wanted her in her high chair 2-3 times a day, for oral feeds, in conjunction with boluses (which is really a time-savor), and he said that in order to get the leak to stop, leaning her back during the feed will take the pressure off the front and keep the formula in the stomach.  It sounds like a crock o' shnizzle if you ask me... all g-tubes leak... but when the kid is sitting upright, or heaven forbid, standing? The g-tube will leak?  This is such a disaster.

However, I did learn that Andi tolerated the feed speed up. If I could cut her meal times down... imagine how much more time we'd have to work on therapy, or simply have more fun not being tethered to the tube!  I'm going to work on getting it sped up.  This feed, rate:  160, dose: 107. She was getting a rate of 97, dose 107... so this will be A LOT faster.  The surgeon told me how big her stomach is... it's a lot bigger than I thought!  I will have to watch out for gas though.  He seemed to think that she swallowed a lot of air and filled her stomach full of air.  That might have been due to her ten steady minutes of shrieking crying, as she no longer likes Dr's -- at all.  Sadly, Andi freaks out around any Dr's anymore. She just doesn't like them.  Considering all she's been through, I honestly can't blame her.  There are times when I feel she's been just a science experiment! (insert colorful monologue here about the g-tube!)

The other thing we have to report was her audiology appointment was this week.  They put her hearing aid in and tested her good ear.  They would talk to her from places she could not see, and she responded a lot more than she did in January when she was tested last.  I didn't get a report of how she did, but I think they agree with me that she can hear a lot more than originally thought. 

Andi's new overused expression of the week is 'All Done!'  I'm not kidding. She's been hearing "All Done!" since I can remember.  All those blood draws, or shots over this past year, that was what I told her when they were through, "All Done!"  Andi is really working that expression a lot now... although, I'm not sure she really understands what she's saying... but, she's definitely saying it all sass-o-frass!

She's so funny.  Just a little character.  She often just wants to make people laugh. So she'll do raspberries and try to get people to laugh or respond.  She's a little comedian, speaking her jive turkey, and finally growing into a Butterball Bean.

Friday, July 15, 2011

The Nap Police!

Days like today, I feel I need to call the nap police!  I, for the life of me, cannot get Andi to take her afternoon nap.  This means, that in a few hours, I will have a little maniac on my hands, who is so tired - she screams, cries, and pitches the biggest hissy-fit this side of the Mississippi.  Sadly, Andi does not take after me in the sleep area.  My head hits the pillow, and I'm gone -- konked out with ease.  Andi, unfortunately, takes after her Dad in the sleep dept., at least in the area of shutting down and getting her to sleep.  Once she's asleep, she does pretty well.  Well, most of the time.  She's such a social little sucker, that it seems like she doesn't want to miss out on any of the action, or seeing people. So, she'll stay awake, until she simply can't stay awake anymore, well, after pitching a major calorie-burning hissy fit.

I've spent the past three hours trying to get her fed and napping.  This is in between shooting out work emails galore and picking up the house a bit too.  I feel fried.  Therefore, I think our society should offer the nap police.  You call them, they come and pick up your child and get them to nap.  Whether it's a magical pinch of some little nerve that sends the kid off to snoozeland, or some of the medicinal stylings of our favorite anesthesiologist, Dr. Woodward.  It, would really make my life a little less challenging.  We could have Cheap Trick revise and rerelease their 'dream police' song - and that would be the major part of the marketing campaign. Okay, I'm reaching.  But, as I look across the room, I see part sweetheart, part monster -- whom just scouled at me!!!  My goodness, she looks so much bigger to me!  Maybe once this feed finishes and her belly is full, she'll take a short "disco" nap and spare me the whiny Friday night meltdown leading up to sleep.  As I just posted on Facebook, "Calgon, take me away!"

Here's a picture of my future Miss Grump.  It's funny, any time you whip out a camera, she's suddenly a happy lil' ham! 

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


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.