22 January 2007

The Girl Behind The Stats

Jordan Emily Rowe (30 December 2005)

1 January 2006 (2 days old)

18 January 2006 (20 days old)

13 February 2006 (6 weeks)


25 February 2006 (2 months old)


10 March 2006 (2.5 months old)


18 March 2006 (2.5 months old)

11 April 2006 (3.5 months old)

15 May 2006 (4.5 months old)

16 May 2006 (4.5 months old)
25 May 2006 (5 months old)
5 June 2006 (5 months old)
10 June 2006 (5.5 months old)
19 June 2006 (with Avery & Devon on Father's Day at the Portland Rose Garden)
2 July 2006 (with Avery [2.5 years old], Devon, & Leslie)
2 July 2006 (with Leslie)

1 August 2006 (7 months old)1 August 2006 (with Avery [2.5 years old])
6 September 2006 (8 months old)
17 September 2006 (8.5 months old)
12 October 2006 (9.5 months old)

12 October 2006 (with Leslie)
25 November 2006 (11 months old)
2 December 2006 (11 months old)
3 December 2006 (11 months old)
3 December 2006 (with Avery, almost 3)
3 December 2006 (With Devon, Leslie, & Avery)
30 December 2006 -- ONE YEAR OLD
3 January 2007 (1 year old)

2 January 2007 (with Devon & Avery)

One Precious Year

Snuggled in for the night (and no, that's not barf under her arm, it's an old towel with paint on it, I guess all the blankets must have been in the wash when Devon put her to bed last night).

So, now for the non-statistical review:

Jordan just turned one, and is still a newborn developmentally. She doesn't sit up, roll over, hold up her head, smile appropriately, reach for toys, babble, or track with her eyes (possible cortical vision impairment).

Her head circumference is far too small, and her MRIs show cerebral atrophy. Her PET scans show newborn-like brain function. Her EEG is "abnormally" normal, meaning that it's very chaotic, but as of now, for some (surprising) reason, she's not having seizures. She does have some myoclonic seizures that do not show up on her EEG & are considered benign. She had Infantile Spasms (and despite the relatively gentle sounding name, these are devastating, brain damaging seizures), but 48 days of ACTH stopped them (knock on wood they don't come back).

She has been tube fed since she was 3 months old, and is very orally defensive -- she takes nothing by mouth, including fingers. She has an incredible gag reflex, and serious reflux, for which she takes Zantac.

We have done a tremendous amount of testing over the last year, and everything has come back normal. If you believed the lab tests, you'd think she was perfectly healthy.

At this point none of our doctors believe that she will ever develop beyond "newborn." Some warn that she may have a drastically shortened life span, due to pneumonia, aspiriation, or a severe seizure, but others say she could be with us for years just like she is.

Due to the extremely extensive genetic, metabolic, mitochondrial, infectious, and neurological disease testing, (all "normal") most doctors believe that she doesn't have a "disease," but that somehow she sustained a one-time "insult" to her brain while she was developing, and that genetics have nothing to do with it.* There are still some docs who think her condition might be metabolic/genetic/mitochondrial, but with each normal test result, that becomes less likely. Even if they couldn't narrow it down to one specific illness, they would expect to see SOMETHING that is not normal in her body chemistry & genes. But with a brain insult, her body chemistry could be normal, but her brain wouldn't work right.

She turned 1 on 30 December, and for some reason I wasn't nearly as sad as I thought I would be. We're starting to accept that we will never know why Jordan is like this, and that's okay. She's just Jordan. She is cute, and warm, and snuggly, and we love her like crazy! Avery is incredibly loving & compassionate with her, even though she doesn't quite understand why Jordan is different from other babies she knows.

We're at the point in our lives, after one hellova year, that we must make a place for Jordan in our family, and not let her be the center & focal point of our family (as she has been). We could be in for the long haul here -- and that's okay. We just have to find our new "normal" as a family.

*According to one geneticist "sh*^ happens". There was NOTHING in my pregnancy to suggest even the slightest problem or "insult." Of course I will always feel responsible, but we have no way to know what "it" possibly could have been, & the doctors always tell me that it was out of my control and not to worry about it -- easier said than done!

21 January 2007

2006 In Numbers

I have to admit, with the start of a new year, my mind was racing for a summary of the last year. The emotions have been overwhelming, so I wanted to look at the year from a numbers perspective. It's taken awhile to compile it all, but here it goes:


The year in numbers for Jordan

Doctors
5 Pediatricians
3 Anesthesiologists
4 Radiologists
2 Opthamologists
9 Pediatric Neurologists
1 Physiatrist
4 Geneticists
2 Gastroenterologists
1 Nephrologist


Therapists
1 Speech Pathologist
2 Dieticians
1 Occupational Therapist
3 Physical Therapists
PRIDE Early Intervention Classes
Feeding Clinic

Hospitals
Legacy Good Samaritan
Legacy Emanuel
Legacy Salmon Creek
Oregon Health Sciences University
Children’s Hospital of Seattle
Children’s Hospital of Michigan
University of California, Los Angeles

Medical Miscellaneous
G-Tube
Kangaroo Food Pump
Feeding Bags
Feeding Seat
Food Supplements (protein, zinc, calcium, phosphorus, multi-vitamin with fluoride)
1 Emergency Room visit
Suction Machine
ACTH (steroid treatment)
Zantac
Tranxene

Diagnostics
PET Scan (2, on brain)
MRI (3, on brain)
X-Rays (3, shoulder, lungs, skull)
EEGs (130+ hours)
Labs (1 spinal tap, hundreds of blood & urine for infectious, genetic, metabolic, & mitochondrial diseases)

Diagnoses & Characteristics
Cerebral Atrophy
Microcephaly
Infantile Spasms
Hypotonia
Severe Developmental Delay

Cause of Jordan's Health Problems & Diagnoses
Unknown & Undiagnosed

Insurance Billing
$120,600 (not including ~$6000 more in pharmacy)

20 January 2007

And Then There Was Dark

The sun came out today, the snow is (mostly) gone, and we were in full swing project completion mode. My favorite project was getting the shades and curtains up in our bedroom. It'll be warmer now in the winter, and is as dark as the night during the day. I know, I know, we otherwise finished that room in September 2005, but as with all things in this house, it seems that we are never really finished. . . .

Devon is most excited about getting the countertops sealed. He does this every year in January, and today was the day. It took much longer this time, since he had to do the bathroom, too. You should see how the water beads on the counters now. . . .

Unfortunately, now that it's dark, Jordan's barfing is contageous. As soon as Avery laid down for bed she started coughing -- until she barfed. Great. Just what we need. A full change of sheets, a steam shower, some cough medicine (mostly barfed up), the humidifier, and being propped up on a stack of pillows and Stanley the super stuffed dog. And it's not helping one bit. Jordan even went in to snuggle her to sleep, but it didn't work. Oh well, we're well trained at this. Now I just have to decide who I should park the suction machine next to tonight. . . .

19 January 2007

A Typical Day In The Life

This is why I've decided to call Jordan a "complete needs" kid, instead of a "special needs" kids.
  • Scheduled an appointment with a ped allergist, after talking to 4 docs that wouldn't take kids under age 4
  • A phone call with her ped neurolgist: He is scheduling a 24-hour EEG to check out her new, strange movements -- we NEVER know what is "normal" for her and what could be a seizure
  • Appointment with another genetics team to explore the rarest of the rarest & newest tests (we're running out)
  • A call from the neurometabolic clinic to tell us that her blood & urine tests from December were, you guessed it, NORMAL (again -- I must have the most abnormally "normal" kid around--if you saw all her spinal fluid, blood & urine workups)
  • Two calls to the dietician to get her prescriptions renewed for her food supplements, and to get her pre-approval sorted out for her new formula she'll be starting in a few months
  • Cancelled her PT visit at the hospital for next week. I need to cancel them all, because, bless her heart, the PT just has NO IDEA what to do with Jordan, so we just end up sitting around talking, which is nice, but not the best use of my time every-other Tuesday, especially when we get great PT at home from out EI program
  • A couple of calls & visits to the insurance company & its website trying to sort out some billing confusions
  • Two calls to the DME company to make sure her feeding & suction equipment is all ordered & ready for it's next delivery, and to try to find out what they've been billing the insurance (failed, will try again on Monday)
  • An early morning, unscheduled, in-home PT appointment to make up for the one missed on Wed due to the snowstorm (and believe me, we are NOT morning people -- the PT must have been laughing at us and our groggy disorientations at 8:30)
  • And, the traditional feeding & medicine schedule, and interspersed barfs & baths & barrels of laundry
  • Then I did my necessary stuff (like banking, chasing down a prescription that ran out while I wasn't paying attention, taking Avery to daycare, etc, etc)

The funny thing is that this seems like a perfectly normal day to me these days -- no wonder I get to the end of the day and don't know where the time has gone (and feel like I have nothing to show for it).

Maybe I'll get something done that I want to do over the next couple of days -- oh, who am I kidding?!

Happy weekend!

17 January 2007

Another Day, Another Snow Day

Wacky weather everywhere. At least on the west coast, and in the south, too. Snow in San Antonio & Malibu, freezing crops in California, and another snow day for us here on Ludlum Hill. Kate & Kelly came over this morning and joined us for some sledding on our hill, then hung out and watched movies and played inside all afternoon. Avery was devastated when Ed came to pick up Kate late in the afternoon, even though they were both exhausted from play.


Jordan joined us out on the hill today. Devon slipped her into a snowsuit, rigged up her feeding pump, and rolled her out in her stroller. She seemed to love being out in the fresh air (it really wasn't very cold, and was melting a little bit by the afternoon), and gave us a few smiles. She's been smiling quite a bit lately, and it's glorious -- we just wish we knew what to do to make her smile, they're still pretty random.

Now that it's starting to warm up, we're expecting to be hit with snow again tomorrow. Many of the schools & businesses are going to be closed tomorrow, too (for the 3rd day this week). I even had to drive nana Noma home this morning (she got here yesterday afternoon, then decided it wasn't worth the drive home last night & stayed the night with us). She was able to get her PT Cruiser within about 20 feet of the top of our hill (the "trap"), but due to kids sledding in the road, she had to slow down and couldn't make it out. She just can't believe she sold her studded snow tires on Craig's List in August, and returned her unused chains to Les Schwab for a full refund in September. Oh well, at least the Pilot has been a superstar in these conditions.


And on the funny front -- The Colbert Report Update:

Washington's Third Congressional District was highlighted on The Colbert Report tonight, with an interview with Brian Baird, our congressman here in Vancouver. It was a good laugh, as always. The Sausage Festival was one of the highlights of the interview. Yeah Vancouver Sausage Festival!

Tomorrow: Bill O'Reilly will be on tomorrow (Thursday, 18 January 2007)! A MUST SEE!

And for all you hockey fans -- you can keep up with the Ontario Hockey League team the Saginaw Spirit while watching the Colbert Report nightly.

I'll Do It My Way!

Well, Avery is totally 3 these days. She's full of hilareous comments and phrases [she'll add phrases like these in the strangest places: "in the whole wide world," "I just can't believe my eyes," "okay Mr. Bossy"] -- sometimes it's hard not to crack up! She's also into "Let's Pretend" -- big time! We spend about all day pretending we're all different people doing different things. I'm relieved to know she has a very active imagination!

On the annoying side are things like doing everything herself & doing things her way! I know these are important developmental stages, but why does everything she wants to do herself take about 5 times longer than it should? When will she have a sense of time? Personally, I can't wait for that. Actually, I take it back -- she does have a sense of time sometimes: she knows when we're in a hurry, which slows her down even more.

And as for doing things her way, I think she does things just to make me a little crazy. She loves painting, but wants to mix all the colors and use 6 brushes at a time, in one hand! And, despite starting out with about 20 Play Doh colors at the beginning of the year, now there's just a gallon ziplock bag of sparkling purply-brown. And Marbleworks -- forget it. It's torture for me. She just can't wait for the marbles to get all the way to the bottom, and catches them mid-path, then starts them at different places in the maze. She never lets me just play with it the traditional way. . . .

I guess she'll grow out of these things (all too soon), but I do find it odd that despite the paint & Play Doh mixing, she won't let her peas touch her olives, or her hot dog touch her bread on her plate!

16 January 2007

No More Alberta

Well, the snow is gorgeous and fun (and it's not even too cold outside), but those clear blue Alberta skies have gone grey.

Here's Avery & the rest of the neighborhood sledding! It's a tough neighborhood for bicycling, but the sledding is great right out the door!

Avery was forced to stuff herself into last year's snowsuit, and found it very difficult to walk & bend over in it. So, at the very bottom of the hill, she asked Devon to pull her up. She's not choking, but laughing and trying to catch snowflakes on her tongue while sliding up.

Life, Interupted

Wow, for a family from NE Washington state & Canada, we are thoroughly loving the snow. It's gorgeous! But not everyone is so happy about it. Kids are, of course, because school is cancelled so they get to play in it all day. But people who decided to get up and try to get to work are stuck in pile-ups on the roads, and business after business is closing. All the news stations are reporting as though this is the storm of the century, and urging people to stay home if they can.

(Drumroll, please) All of this for 1 inch of snow! Of course we may get up to 3 inches by the end of the day, but it's been snowing for 5 hours now, and so far we've got 1 inch! [those measurements are for Portland, I think we actually do have 3 inches here in Vancouver].

I'll have some pics up tonight of Avery & her friends sledding down our hills.

13 January 2007

Girl, Uninterupted

Absent With Leave. What a great idea. After a year at home with the kiddos, I just needed a break. That's not to say that Devon doesn't, but he does have some luxuries as the sole wage earner in the household these days.

  • An office, downstairs, with a door
  • Travel outside the home, including some nights in hotels

  • Conversations with adults about things other than poop, pee, and Jordan's current healt
  • An office, downstairs, with a door. Oops, did I mention that one again? Well, it might not seem like a huge benefit, because he's supposed to be working when he's in there, but I happen to know for a fact that if he wants to talk to a friend on the phone or take a little mental break during the day -- he can!
Anyway, I noticed over the last 2 months that I kept wishing for Devon & the girls to go away for the weekend by themselves, so I could have a little peace & quiet, and to try to get a few things done that I never seem to be able to touch, since little fingers, barf, and almost constant attention seem to forever get in the way.


In the end we realized it was more practical for me to get away than the three of them, and with December in the rear view mirror, I loaded up the car and headed up the gorge (the Columbia River Gorge). Of course I left on Thursday, the day after our "blizzard" -- and due to the freezing temps some of the roads were still brutally icy (I even saw a city bus sliding diagonally on 78th Street as I was leaving town).


But, despite the cold, it was a really gorgeous day*. There was a touch of snow everywhere, and as I drove farther towards the Cascades it only got sunnier & more clear. I landed in Hood River, got a room at the historic little hotel in town (that has free wi-fi in all guest rooms), and settled in. I brought a few projects, which I started but didn't necessarily complete (I guess I would have needed a week there to finish them all), I watched alot of CNN, caught up on my Grey's Anatomy, and just hung out. The only time I had to go out was to feed the meter on the street every 3 hours (no hotel parking!), and to get some food or go for a walk when I was feeling holed in.

I admit it -- I didn't get too much sleep. I would have liked more sleep (as usual), but to be honest, why would I want to sleep away that glorious, solitary time? I mean, I got to do things for hours at a time, completely uninterupted!! I didn't call people, or answer my cell phone, or anything. So, consequently, I was up until the wee hours of the morning both nights I was there. My how I lost track of time while not being set to the clock for Jordan's feeding & medicine schedule, or pulled away from my chores to play more Play Doh or Marbleworks with Avery. [I do love playing, I just don't like doing things in 2 minute chunks all day long].

But, after two nights away, I was ready to head home this morning & get back to Devon & the girls. I missed them terribly. I even tried to convince Devon to bring them out last night, but he didn't, and it was probably a good thing because the roads were icy, the room wasn't overly big, and I was up until 04:00am just painting -- uninterupted.


While I was away I was inspired to get a space downstairs set up just for me. So, I dragged in the old table and chair from the duck barn (aka storage barn with ducks on the front, hence the nickname) and am setting up my own semi-corner of the world downstairs (unfortunately there's no door, though). I don't know how peaceful it'll be, because all around me are Avery's "energy & exercise" toys -- her scooter, her roller skates, her indoor trampoline, and the (otherwise unused) exercise bicycle. I've been trying to convince her to go downstairs a couple of times a day to do her running & jumping until the nice spring weather gets here**.

It was well worth the trip, but now I'm back to reality: A rambunctious 3-year-old chatterbox (with a typical 3-year-old attention span), a "lazy," scheduled Jordan, a busy Devon, and a house full of laundry & chores (I finally took the outside Christmas lights down today & got all the decorations all put away from their staging spot on the back deck and in the new mud room).


Go Gaels (daddy's new favorite outfit)!




I think I'll have to do this again, but a little sooner than next January!

*The weather the last few days was very reminiscent of Alberta weather. Bright & sunny, but cold & snowy. Both Devon & I commented, and we both have very "warm" feelings for the deceptively blue, sunny winter sky of Edmonton. Of course, you could never tell from looking out the window if it was going to be +30'C or -30'C. . . .



**It still cold, and still a little snowy, so Avery went out today to play in the snow! That doesn't happen too often. Usually its just cold, rainy, and very slippery, so this was a super big treat. That's not to say she has it down, though -- her choice of shoes was less than appropriate (Crocs!), and she didn't realize she wasn't supposed to throw snowballs at the windows, or wash them with her gloves. I think she learned the throwing snowballs at the window from grandpa Earl at his house in November.





10 January 2007

Snowed Again


Well, I think we're going for a record here in Vancouver. The number I heard was 1 snow every 6 years, but so far this winter I can think of 3 episodes of snow already. We missed it last night, but late this afternoon it started with hail, then turned to big, wet flakes. Avery joined Sean & Sarah in their yard to play in it. Sarah was all about eating it, Sean was sledding like a maniac, and Avery tried a couple of times to lay down and make a snow angel, but she'd get up as fast as she laid down in it. Too cold. Granted, it was wet, so when she was good and cold enough, we came home & she got a nice luke-warm bath (she doesn't like the water too warm) & a cup of luke-warm cocoa. She's really getting to be a snow expert this year. Of course, nothing like Devon & I were by her age, but, I'm glad she does get to play in it as much as possible.

It's supposed to be sunny, but cold tomorrow. Perhaps Avery will get more play time with Sean & Sarah, and actually try out the sledding hill herself.

What the . . . . hail?

Sean, Avery, & Sarah get to play in the snow, again!
Brrrrr, Avery just couldn't get the angel thing down, it was too cold to be lying in the snow, she thought.