Wednesday, September 30, 2009

The "B" Tree

Hello everyone!

A few of my recent posts have been kind of depressing, so I thought I'd chipper things up a bit.

Jeff and I are excited to be donating a 6'6" tree to the
Festival of Trees. This is an annual fundraiser for Primary Children's Medical Center where Bridgette had both her surgeries. Last year, the event raised $1,495,840.74. Every penny of that money went directly to families that needed assistance, not to administrative costs. It's a SUPER COOL community-driven event.

And now the zinger! We're hoping you all want to help!



We're calling our entry The "B" Tree in honor of Baby Bridgette and her surgeon, Dr. Black. We're decorating the tree in "B" words (bells, bows, birds, berries) and trying to fill the space below with "B" toys (bears, board games, baby dolls, etc.)

We could use help raising funds, with toy donations, and with physical labor. I know this phrase is overused, but every little bit really does help!

You can find more info on a really nifty website I made all by myself yesterday:
The "B" Tree.

We set up the tree November 30.
The silent auction is December 1.
Public viewing is December 2-5.

I know that seems so far away, but as the primary organizer of The "B" Tree effort... I'm sort of freaking out about how soon it is.

Saturday, September 26, 2009

These Are Cute Though

The first video is totally worth it. Enjoy!

The second one shows some of her week one mobility progress.

The third and fourth videos are for the grandmas in our lives.

Video 1 -- 10 seconds: Flibbertygibbet

video

Video 2 -- 1 minute: First ever solo move from knees to bum. Caught on film!

video

Video 3 -- 2 min, 30 sec: Knees to bum, again! (And trying to hold mid-line for dear life.)

video

Video 4 -- 1 min, 20 sec: Just for fun...

video

Boring Assessment Reports (No Cute Pictures)

Bridgette has had 3 of 4 developmental assessments by Kids on the Move.

Assessment #1 qualified her for the program. We discovered her gross mobility is a whopping 1 on a scale of 1-100.

Assessment #2 happened Monday and was more comprehensive. We don't have the full results of that one yet, as the categorical tallies had not been totalled before her physical therapist, Betsy, left our home.

However, Betsy was pretty sure Bri's motor problems stem from a desire to control her mid-line (and not fall) more than any physical pain. One of several telltale actions occurred when she witnessed Bridgette reach for an object with one hand and leave her other arm out in the opposite direction for balance. Most kids reach with both hands, she said, which gets their hands on the floor and naturally flips them onto their knees.

The good news is that without a physical malfunction to correct, Betsy said most kids who have mid-line issues tend to forget about rigidity once they "get it," although getting it may take some time. Also, Bridgette throws a serious fit whenever we force her to move, but she calms down quickly when we take our hands off. Betsy assured us that not all kids in the program are so easy. Some with more mental issues refuse to calm down at all, making continued attempts difficult to impossible.

Despite this, I have to put myself in a lot of time-outs while I'm working with baby. I don't actually yell or throw things and hit or clench my fists and shake like she does, but internally, I'm not really sure which of us gets more frustrated. She simply refuses to bend her knees, and when I make her do it... well hell hath no wrath and all that.

A couple of you are thinking the apple has not dropped far from the tree. (And if you know Jeff, you're thinking it's his family tree, and if you know me, you're thinking it's my family tree.) Please stop thinking this. It's just not nice. But besides that, her trouble really is a bit extreme. We hope as she continues to develop and milestones are reached, both her abilities and emotions will even out some. Then you can guffaw and say she's just like us, quirks and all. Right now, it just feels like you're teasing our special child and our (obviously sensitive) situation.

That said, almost all of you have really shown us a lot of love as we try to do our best with Bridgette's many health concerns. Thanks!

Betsy did notice Bridgette's abdominal slump toward stoma-side, so we will be re-addressing that at a future time. We may even do more x-rays to rule out potentials like scoliosis. If x-rays are scheduled, I'm sure we'll check her knees, hips, and feet too just to be sure there are no other issues such as dislocation or extra bones.

Assessment #3 was done by an occupational therapist, Mark, who did an eating study. Mark said that based on his observations, he'd have qualified Bridgette for Kids on the Move even if she had no mobility issues. Of course, this made me sad... again.

He noted that Bridgette doesn't chew but rather shoves her food from one side of her mouth to the other. Her closed lips were the indicator there, and I suppose that's why he's a professional. I had no idea. It looks like a tight-lipped chewing motion. Most likely that is why she chokes and vomits.

Again, the good news is that this is probably correctable through therapy alone. Since Hirschsprung's kids sometimes have esophageal motility and other related G.I tract problems, I'm pleased we may avoid additional surgery/medication.

Funny note: We have always had trouble prying Bridgette's mouth open (to rescue her with finger sweeps, to dropper her medicine, etc.), and when she opted to chipmunk a piece of ham in her cheek during the study, I was somewhat relieved to see that Mark couldn't open it either, even with all his experiential tricks. She has a tight jaw and resolute determination.

Like her physical therapist, Mark suggested a number of things we should start doing now to help her improve her eating. One general suggestion, "Try to get her to chew," really amused me. When I asked how, he said, "You and your husband should put crunchy things in your mouths and chew with your mouths open to show her how it's done." :) :) :)

Since Bridgette's refusing sippy-cups and still drinking from a bottle (also refusing to hold it herself), he asked us to skip straight through the sippy-cup stage to cups and cups with straws. We have tried both on regular-ish occasions. She'll take sips from a cup if we're holding it, but no luck with straws.

And then today at Chili's, we offered her a straw and she drank like it was second-nature (and I suppose for most kids it is!) I actually teared up. She even held her own cup. If we're lucky and she remembers how, from today on, no more bottles!

Assessment #4 is perhaps a misnomer. Next Wednesday Andrea, our case manager, and Betsy will take an hour with us to create an IFSP (Individual Family Service Plan). It will dictate what we want to accomplish over the next 6 months. Most likely Betsy and Mark will both make bi-monthly visits to teach me and Jeff new tricks of the trade.

The ultimate goal, obviously, is to catch Bridgette up to her age-group. Once she gets caught up, she is dropped from the program. Andrea let me know, though, that once she's qualified she will not be dropped as long as she is displaying even a minor delay in any one area.

Lastly, Bridgette's yeast infection did in fact flare up (worse than ever) as soon as her last two-week round of Diflucan ended. We're starting round three today but are concerned about the underlying cause. We will be consulting her pediatrician at her 15 month well-baby check-up on October 8, and there's a high chance we will be referred either by Kids on the Move or by Dr. Savage to a registered dietitian and a G.I. tract specialist soon.


Congrats on surviving this whole post!
OR
Congrats on skipping to the bottom of this post!

Friday, September 18, 2009

PLEASE TAKE OUR APPLES!

Jeff's brother Mark and his wife Kelly like to garden, can, and preserve. Although this summer was not a year I could tend a garden, our various fruit trees produced beyond belief, so we called them to see if they wanted apples. After they had plucked their fourth large bucket, Kelly said, "I thought you were kidding on the phone when you said you have 10,000 apples."

No kidding.

We probably have closer to 20,000 apples, still, despite having whacked-off two big tree branches that were cracking under the weight. Perhaps 100-200 apples fall off every day of their own ripening accord and rot in our grass.

So the title "PLEASE TAKE OUR APPLES!" is not meant to be clever. It's an invite/command. I'm practically yelling at you. The tree is in our front yard. Help yourself. For free. Any time of day or night. I only ask that you not injure yourself.

They are Golden Delicious, and even if you don't prefer this type store-bought, you'll likely enjoy them fresh. They are good for eating, canning, applesaucing, and pie-filling-ing. Probably 1/3 have worms (we don't spray anything here, very naturalistic... and lazy), but 2/3 of 20,000 is still a whole lot of good apples.

Speaking of good apples...

We've felt very lucky to have such a good fruit year. Despite a lack of veggies, I have frozen gallons and gallons of cherries, strawberries, and peaches. Our pear tree was so full it cracked in two and we lost half the tree. One exception was our apricot tree. It blooms quite early and was hit by a late freeze. At the time our 10 apricots ripened, we were still at the hospital with Bridgette, so we couldn't have harvested them anyway.

In ending, I report on babs.

First, the bum. It's still raw. Off and on it's so raw she can't sleep. Occasionally it looks good, but it's all very unpredictable. It can look good at 8 a.m. and be bleeding drastically by 10 a.m. She's finishing up a round of Diflucan, so the yeast is under control for now. I worry that it will come back as soon as she's off meds, but we shall see what we shall see.

Second, the food. I'm attempting to widen her food choices, but it's really hard. I walked down every aisle at Wal-Mart and basically came up with the same foods we're already feeding her. Oddly, I've found she likes peaches, and she digests them pretty well. She's continued to be picky and not eat much, and then last night she downed 1.5 bananas in one sitting. Another aspect of unpredictability, I suppose.

Third, the support. I think I've mentioned, but Hirschsprung's is a highly male dominant disease. I'm in touch with a handful of moms around the world who have Hirschsprung's daughters, and one of those girls is just one month older than Bridgette. They were in hospitals across the country from each other having their pull-thru surgeries at the same time.

While at the store, the mom asked her daughter to pick out an outfit for Bridgette. How cute is that! Izzy pointed out this darling thing (that you can't really see in this photo very well, but trust me) and it's just the right size for Bri to keep wearing as the weather gets cool. Thanks, Isabella!

Fourth, the locomotion. Now that Bridgette has qualified for therapy through Kids on the Move, we are in "process." There is paperwork to do, more thorough assessments required, and meetings to attend. Some of those have already occurred but most are scheduled in the next week or two. We hope to have Bridgette's assigned physical therapist, Betsy (I have yet to meet her), starting regular sessions about mid-October.

In the meantime, we still try to help Bridgette stand, roll, and crawl on her own, and she continues to hate us for it.

I'm not sure how to determine whether this delay is related to her HD trauma in year one or is a personality quirk (perhaps a control issue, not liking to move out of alignment for fear she'll fall) or is an offshoot of a more serious mental problem or is a separate physical issue like hypotonia or .... ??? We have thought of a long list of potential reasons. We asked her which to focus on, but she responded with a cryptic, "Nang, nang, nang."

We'll have to work through the potential causes to fully understand how to help her.

Last, the tantrums. Yeah. She has definitely started throwing tantrums. Thrashing. Yelling. I hope some of her frustrations can be worked out once she starts moving.

Stuff, Literally

This week I discovered the joys of selling our stuff! Sell, sell, sell! And also, I discovered the benefits of buying other people's stuff that we need! Buy, buy, buy! We've gotten a newer, nicer, bigger dining table and a jogging stroller. I'm still searching for a proper king bed frame.

It's like this market society works or something...

All transactions have gone through KSL Classifieds Online.

Here are the things I have sold:




Dog not included...



9/11 City Drill

Under the guidance of the Safe America Foundation, Lindon City was one of 10 U.S. cities that chose to participate in a National Drill Down for Safety on Patriot Day. The objective of the event was to account block by block for Lindon City residents.

The goal for this first attempt was to have 75% of all residents report. In the case of a catastrophic event, such as an earthquake, the accounting plan would be put into effect so city officials and search and rescue groups could be notified exactly who is missing.

At 6 p.m. policemen who had been strategically placed around the city blared their sirens. One or two individuals on each block were also chosen to honk their car horns. The noise signified the start of the pre-planned "disaster."

Each household reported to a block captain who then sent two runners with accounting information to a neighborhood EOC (Emergency Operations Center; ~30 EOCs were created for the event). The neighborhood EOC tallied all the block information and sent it to an AOC (Area Operations Center; 3 AOCs) and the AOC tallied those numbers and sent a runner to the Lindon City Chief of Police, Cody Cullimore, at a city hall command post.

In addition to runners, there was some use of handheld radios and licensed HAM operators. The county SCAT (Sheriff's Communication Auxiliary Team) set up a mobile command post at city hall to relay messages between AOCs.

I was asked to help plan the event and was pleased to work with a lot of fine individuals as we put all the details together at weekly meetings leading up to the drill. I'm officially on the documentation committee, so my main role is actually now, post-event, collecting data and lessons learned and writing an After Action Report.

It just so happens, I am also a city block captain, so here are some photos of my block as the families began reporting. We were "missing" close to 15 individuals, but only 2 were unaccounted for.




Citywide we had 68.9% participation. We didn't hit our goal but came fairly close for a first effort. The city plans to make this an annual event, adding more complex drill components as our organization and skills increase.

Thursday, September 3, 2009

The Baby & the Tomato Seed: A Parallelism


Bridgette's preliminary developmental assessment was completed this morning by Andrea Bandmann, a social worker and Early Intervention Family Advocate from a local community non-profit organization called Kids on the Move.

Andrea did a fairly basic assessment based on observation, rating scales, and interviewing me and Jeff. In order to qualify for their services, Bridgette had to exhibit at least moderate delays in one category.

We were told that if we qualified, Andrea would become our case manager, and then therapists would do a comprehensive assessment to evaluate cognition, fine and gross motor skills, receptive communication, expressive communication, social and emotional development, self-help skills, health, hearing and vision.

We were pleased that Bridgette's current development seems fairly on par, except for her gross motor skills, which we expected. What I didn't expect, and was very sad to find out, were her actual results.

Andrea plotted a little graph showing age and skill level. Much like height and weight, gross motor skills can be plotted according to percentile. She showed me the 5% curve then pointed to the dot representing Bridgette's development. She was way to the right, in the less than 1% range.

Needless to say, I was feeling pretty sensitive and reflective today.

Within a few weeks of Bridgette's official diagnosis of Hirschsprung's Disease only a few days after birth, we were introduced via the internet (either from readers of this blog or support groups we joined) to a lot of families raising children with special health concerns. I've seen a great deal of strength in those children and their parents. Some of them amaze me with their constant positivity.

I don't suppose I consider myself particularly optimistic or pessimistic. I just deal with the realism of Bridgette's needs from day to day, try to help her have good quality of life, and love her on the side.

This afternoon, though, I had one of those wonderful non-tangible experiences that helped me feel o.k. about her and her situation.

In planning to post an update, I thought it might be nice to include a new photo. I took her out on the deck because her bright blue eyes always look so fresh and clear in the sunlight. Besides, her yellow onesie matched my tomato planter. As I was trying to get her to smile, and she was happily ripping leaves off and tasting them, I thought about that tomato plant.

It's a bit of a rare case.

I bought a fancy hybrid tomato for dinner one night, and when I sliced it open, I discovered that one of the seeds had sprouted inside the tomato.

So I planted it.

It took a long, long time to come up, and even longer to develop, but now it's out on the deck sending out new blooms every day. It's isolated so the weeds don't choke it, and since the sprinkler system doesn't reach it, I have to take the watering-can out each morning. Unlike the produce in our neighbors' gardens, the tomatoes on this plant are still green. But they're coming along nicely.

When I set Bridgette next to the plant, I remembered that first seed, and I felt pretty overwhelmed at the similarities. I think she's got some seeds inside of her that are just waiting to sprout. She may take a bit of special care and green up a little late in the season, but I'm sure the "tomatoes" she'll give to the world in future years will be worth the wait.

By their fruits ye shall know them...