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!

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!



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!



Real Life, Blinders On For Safety!

Sometimes I feel bad from disconnecting from others with kids Andi's age.  Then I take her to Costco, and I see a kid half her age sitting up in the shopping cart.  It's hard.  It's a hard that no parent should have to know, but this is our daily reality.  It reminds me that being sort of distant, is a way of protecting myself from the severity of our situation.  Seeing she's 0.01% on the weight chart -- it's one thing to see that on paper, or write that, it's another thing to see a kid half Andi's age twice her size.  It takes the reality of the situation and makes me face it.  Self involved, self-indulgent to avoid reality.... maybe, but I see it as a way of keeping my wits about me and enabling me to stay positive.

Andi's been doing really well lately.  She's up to a 100 ml boluses, four times a day, then up to 34ml at night, for 10 hours.  That's a lot of 33 calorie formula.  In addition to that, she's taking food by mouth two to three times a day.  With each feeding, she seems to be getting better.  Practice makes perfect!  Last week, she weighed in at 14 lbs, 7.5 oz's.  A good weight gain (4.5 oz's) for two weeks!  She's growing, even developing a bit of a belly.  We're working on it! Haven't yet resorted to Burgerville, but we might just have to do a Tillamook Cheeseburger & chocolate shake in the Cuisinart!

Today, Andi initiated a new member into the yanked-out g-tube Hall Of Fame!  Yep.  Member #4 is her Grandma!  Grandma was watching her today, and the dang thing got yanked out.  I was on top of a hill, it felt like a mountain to Maddux and I who ran down it, but I'd settle for calling it a very steep hill.  We got home despite dang stop lights, slow drivers and idiots in our path -- and popped the dang thing back in.  To me, now that I've done it several times, it's no big deal.  However, poor Grandma got to experience the fear.  The gut retching fear of what to do, who to call, how to handle, and honestly, panic.  It's panic inducing to those that haven't dealt with it, or know the specifics of how much time we have, how to handle, etc.  Grandma is probably in need of a trip to the day spa, after enduring the trials of our reality.  However, she did great and Andi is very sweet on her Grandma.  Hopefully, Grandma is able to recover quickly.

So, we continue to work this reality, with our blinders on for safety. Perhaps it is a bit lame to the outsider looking in, but to us, it's self-protecting from an already saturated soul of worry.

Aspiring To End Aspiration

Barium Swallow Study revealed that Andi aspirates on thin liquids. 

Aspiration is: 
Aspiration can occur when there are problems with swallowing and/or in conjunction with gastroesophageal reflux (GER). Aspiration can result from a primary swallowing dysfunction or from lack of coordination between sucking, swallowing, and breathing. Infants with increased respiratory rate may be at increased risk of aspiration.
Respiratory consequences of aspiration can be severe. When aspiration is suspected, families should be promptly referred for further diagnosis and treatment.

So ... what do we do about it?!

Treatment of GER. Please see section on gastroesophageal reflux.

Modification of the food or feeding positioning: Sometimes VFSS shows that an infant can swallow thickened feeds, foods with temperature alterations, or foods with other changes in characteristics. In this case modified feedings may be given. Adequate fluid, energy, and nutrient intake should be assured when modifications are made. This treatment should always be frequently and carefully monitored. Infants with nippling problems or GER may have difficulties with thickened feedings. Adequacy of fluid intake should be assured when feedings are thickened. For more information, see Feeding and Swallowing Disorders in Infancy by Wolf and Glass.

Pacing of feedings: Caregivers may promote more appropriate coordination of suck-swallow-breathe by helping the infant to "pace" the feeds. Referral to a feeding therapist is appropriate for further assessment and for caregivers teaching.

Elimination of oral feedings: Aspiration that can not be successfully treated in other ways may require at least temporary elimination of oral feedings. In this case, referral for ongoing therapies to maintain appropriate development of oral motor skills is essential if oral feedings are to be successfully reinstated.

Infants at risk for aspiration associated with BPD and increased respiratory rate should be referred to a specialist for management of BPD.

We're to work on the pacing of feeds, 3 times a day and no thin liquids - such as water or pedialyte by mouth, and no disolvable solids -- only purees. I'm hoping this won't set us back too long on a g-tube removal party I hope to throw with glee.  And to quote the lady who might've seen my disappointment at the news, said, 'hey, it's information and that's a place to start.'

Birthday Magic

Today is the birthdate of Andi's grandma, from whom she was named after.  Ma would've been 71 today.  I am too emotional to even write about Ma, how much I miss her, and how sad her not being here makes me.  Hopefully, Ma can throw us a little luck, as Andi is having her swallow study today up at the hospital clinic. We're hoping the swallow study shows just weakness, so we can fast track to getting rid of this leaky g-tube.  It is my belief that getting rid of that thing would resolve so many obstacles.

So Ma, if you would be so kind, please throw our lil' Bean some of your magic.  We could really use a little luck.

Happy Birthday, Ma.  We love and miss you!

Beany Workout!