Bumbo Pooper?

We are constantly looking for new places to prop up Jordan, and all the better if she has to "work" at it a little bit. On that note, I've been looking for a Bumbo Seat for a couple of months now; we'll try anything to give her a change of scenery and a different type of workout. I really didn't want to order one on-line (in case it didn't work and I wanted to return it), and I couldn't find one in any stores. Then, lo and behold, there it was in Target tonight. I picked a lavender one (it looks less medical/institutional than the green and teal ones) and brought it home for a trial.

If you think her face is dirty here, you should have seen the foozie smeared all over her clothes! Daddy's already got her hooked on foozies (smoothies).

Avery got to it first, and we practically had to pry her out. Then Jordan got her turn. She sat well, if you don't count the floppy-headedness. Time for some engineering. After a few tries, we found that a small quilting cutting mat fits perfectly, and is rigid enough to work. Voila! New Jordan seating option.

But as excited as Avery was about the new equipment, Jordan seemed to dislike it just as much. She quickly got mad at having to support her head herself, after just a little bit of fussing, she pooped! It took me zooming back to the days of Avery & her exer-pooper capers (or pooper-saucer, as some people called it). When Avery was 5 months old she started hanging out in her exersaucer (thanks, Deina!), which she LOVED! But, everytime she played in it she pooped. It didn't matter what time of day it was -- if she was in it, gooey diapers followed. When she became mobile she eventually refused to go in the exersaucer, and nothing has replaced it in quite the same way.

Avery in the exer-pooper (April 2004, age 5 months)

Only time will tell if the Bumbo seat will help Jordan develop her neck muscles and sitting posture, or become her Bumbo pooper.



















I'm so mad I could poop!

How Do You Do That?

I know that I've wondered that many times about others (and not just about families with special needs kids), and what they say is true. You do what you have to do, as illustrated below (I hope you can read it, if not, click on the link below):

http://www.gocomics.com/clearbluewater/2006/08/20/

Time To Catch Up

And Eat! Devon made a delicious dinner, mostly all on the BBQ, and we all got to catch up when Terry & Jacoba joined us for dinner tonight. It had been so long. Terry reports that things are busy at work, which is good. It's nice to hear that my other life (as a geologist) hasn't completely disappeared. I do miss it, but I have to admit I don't miss the daily drive to Tigard & back. Less than a year until the lease is up and we can move downtown. Hopefully I'll be able to go back to work by then. Jacoba says things are going really well at the hospital now that they've had their first anniversary and some of the bumps have been smoothed out. She's even working days now, so I plan to stop in and say "hi" when I can.

Avery was on pretty good behavior, for a 2.5-year-old that is. She sure wanted to be the center of attention tonight, and did a pretty good job of using her "excuse me" when the adults were talking. However, she does think that if she says "excuse me," that we're all supposed to stop immediately and pay attention to her, and if we don't she starts yelling it. When I went to see her after she'd gone to bed I asked her if she liked Terry & Jacoba. She said "yes," but was a little worried that "tacoba" was trying to steal her hot dogs. . . . They both got pre-bedtime hugs, so I think they're in her good book.

It's so nice to have people over! We love it! We're not very formal, but we love the time to visit and catch up and talk about things other than Jordan. And Devon loves that he gets to cook a good meal, and that others will really appreciate it (more than me, because I'm a terrible eater). Tonight was BBQ shrimp, mediterranian cous cous, an avacado salsa (for the shrimp and chips), and marinated veggie-kabobs. It was all so yummy!

So, please stop by if you get the chance! We'd love to have you, and you might even get a great meal out of it (although some evenings you might risk a can of baked beans with hotdogs added in, or cereal if I'm cooking).

It Will Dry

Another favorite of ours: "It will dry." One day at Nana Noma's Avery dropped some water on the sidewalk in front of her house. Dutifully she went to get a towel to clean it up, but Nana Noma stopped her and told her that it was okay, it would dry. Now apply that phrase to everything -- a peeing experiment on the living room floor, water all over the bathroom*, and recently non-liquid events like dropping books on the floor or smashing her knee on a chair. "It will dry" she says as she brushes it off and goes on her merry way.

*In both of those scenarios we had to review lessons about inside activities, outside activities, and only peeing in the potty. She was very sincere about the peeing incident, we couldn't help but turn our heads and laugh.

Clarification of previous post -- "Chopped Lizard" was Avery's interpretation of "Chopped Liver"

Mary Lou vs. Janet

That would be Mary Lou Retton versus Janet Evans.

Our mini Mary Lou Retton had her first gymnastics class today, and after that we all agreed to switch her to swimming classes instead. In the gymnastics room she was too distracted with all the things to do, and it was clear she was never going to listen to or follow the instructions of the teacher. Too bad, as there was only one other girl in the class (she was much smaller, but 3, and did great with the one-on-one attention). Avery only settled in once we got her jumping -- first on the mats, then on the trampoline. Jump jump jump. She didn't even want to try out the mats for somersaults -- apparently she'd rather punish herself on our hardwood floors and deck.

But, it all worked out in the end. Once she saw the swimming pool, that was it for gymnastics. So we switched our new little Janet Evans over to a Monday evening swimming class with Nana Noma, whose aching back also may benefit (too much Jordan lifting?!). This from the kid who hated baths for 1.5 years, but seems to have found her calling in the swimming pool this summer.

We took the camera, but no pics. It was toooo hectic to try to photograph the gymnastics debacle. Perhaps I'll get some shots in the pool next week. Perhaps we'll wait 6 months or a year to try gymnastics again.

Trapped!

Help! Let me out of this enormous body! Perhaps that's what Jordan is screaming. I read recently that being on ACTH makes your whole body feel 'asleep' (you know, that tingling sensation you get in your leg or arm occassionally). Many kids on ACTH freak out when they are touched, so perhaps there's something to that. No wonder she was miserable!

Day 1 of ACTH (13 July 2006)

Weight: 17 pounds, 11 ounces

Day 51, 3 days after the last ACTH (2 Sept 2006)
Weight: 20 pounds, 12 ounces

Percentage Weight Increase: 17%

Weight gain: 1 ounce/day

Average 6- to 9-month-old weight gain: 0.33 ounce/day

No wonder our backs are breaking!!

So, I had to dig into Avery's clothes this weekend to find something for Jordan to wear. This is what she has on today, along with a flashback to Avery in the same outfit:

Jordan (8 months, 1 week)

Avery (22 months)

Here's a favorite flash-back to last October at the pumpkin patch.

Here's another great comparison of before & after ACTH treatment, of a fellow IS baby (Logan). Scroll down to see Logan before, and then at 45 days on ACTH. Keep scrolling to see him 5 months later.

http://www.loganandrew.com/Treatments_Medications.html

Medical Mania

Mostly good news today. Somedays, like today, my head spins & it's difficult to keep up.

The National Institutes of Health (NIH) called early from Bethesda, Maryland, to follow up. They want to review ALL of Jordan's medical records, results, tests, everything. Once the review is done, they will decide if they want to see her. If so, they will fly us out, put us up in a hotel, and she will be evaluated by 5 to 10 specialists in the genetics & metabolic world. The head doctor of the program said that, if selected for follow-up, we could expect a ~66% chance of getting a diagnosis from them. I have to get her entire file shipped off, including a few pics from birth to now (those help with the dysmorphology phase of evaluation).

On to physical therapy. If it hadn't been a holiday yesterday I would have cancelled, expecting it to be a bust since Jordan still isn't doing what she was 4 or 6 weeks ago, and is screamin' & crabby as hell. But, of course, as soon as Katie started working with her she calmed down, and performed! Typical. She was holding up her head, trying to sit, and even rolled over a number of times. I guess it really is hard to see the improvements when I see her everyday, all the time.

A little looser, and hangin' in the hammock

Blood pressure check: It was up pretty high today, possibly from her added salt regiment. The (Salmon Creek Hospital) nurses on the peds floor were curious why we weren't around last week, and had to know all the details about our hospital stay at Emanuel. They ALL used to work there, so they wanted to know who our nurses were, and what happened, detail by detail. I wish we could have checked in there last week. . . .

Labs: Only a basic metabolic panel (to watch Na & K in particular) ordered today, and a test for Carbohydrate Deficiency Syndrome that was supposed to be collected last Tuesday, but we ended up at Emanuel instead of going to the lab for the blood draw. They, too, were curious about our whereabouts, and were disheartened to hear of our unbelievably bad time with blood draws at the children's hospital [I was extremely frustrated last week, Jordan is NOT a voo-doo doll! I told every person who came to poke her how the Salmon Creek women can get blood without blinking an eye]. The CDS test was ordered by our UW geneticist. All the docs are ordering all their own tests, and believe me, it's getting confusing!

Called UW geneticist to get Jordan's records faxed to the correct number, and updated them with the info about the CDS test and the yet-to-be-approved Prader-Willii DNA test. They want all their labs run at Children's Hospital in Seattle, instead of the Mayo Clinic, where they would normally go.

Called the pediatrician to discuss the increase in blood pressure. She'll have to consult with the nephrologist to decide what to do. I also wanted to hear the results of the BMP, and follow up with some of the faxes and referals she is sending out to other docs. However, she didn't call me back, so I'll have to chase her down tomorrow. We don't have any more doctor appointments scheduled until Friday (2 that day), and I'm afraid I'll forget everything by then. [She will have blood pressure and labs checked again on Thursday.]

Down to Emanuel for EEG #5: Believe it or not, Jordan had screamed herself to sleep by this time, and slept through the set-up and the test (this is nothing short of a miracle to sleep through). In fact, at the end we tried to wake her up to get a little of that info recorded, and we COULDN'T. Unbelievable. The tech kept saying "what a sweet, gentle darling," etc., and I wanted to just leave her there with the tech for a few hours so she could see how wrong she is. How do kids always seem to make parents into liars?

Called 2 geneticists in Los Angeles. I actually spoke to one -- he answered the phone himself. Kinda crazy, that never happens, but somehow I called his laboratory (he's at UCLA), and he picked up. He gave me the number to his genetic counselor (assistant), and she booked us for an appointment on 23 October. Had to leave a message for the other geneticist.

Called the ped neurologist at UCLA. Had to leave a message. He swears he'll get back to me by the end of the week to book an appointment. Hopefully we can make things coordinate around the other appointment in LA, and not interfere with the PET scan in Detroit (that might be as soon as the end of September).

Daddy, you shaved!!
On the Avery front: Today was the first day of school, so her daycare was pretty bare, only the under 5s left. She had a much better day interacting with the other kids. She seems to be a bit scared of the bigger kids. She was supposed to start pre-school a couple of blocks away today, but a month ago they decided to close down, and I didn't have time to find her another one. Only a few pre-schools take kids younger than 3. I'm following up with one -- tomorrow is their first day so we'll have to see how it goes. However, tomorrow is her first day of gymnastics, and she can't wait! She's all about the somersaults and the jumping, so it should be right up her alley. But she's not a huge risk-taker (she gets that from Devon), so we'll see how it goes. Nana Noma found the class and is going to take her, but I'll be sneaking out to go watch & take pics (in the sly) as often as I can. She has quite a collection of leotards already.

I think my dad's gone CRAAAZZZYYYY!

Thank goodness for yummy leftovers in the fridge. We were all too pooped to cook.

A heavy load!

Thankful For Friends

(all pictures here by Kelly Wood)


Today best friends Avery & Kate had a chance to burn off some energy at Evergreen Park. The weather was perfect, and Kelly & Leslie enjoyed the time to chit-chat and catch up. As you might guess, a trip to DQ followed. Ice cream treats for everyone, even daddy who stayed at home to work (catching up from last week). Pooooooooorrrrrr daddy.

I really need a couple of hours every now & then to get away from the house & clear my mind (and this time rest my ears, too). A big thanks to Kelly for taking such good care of me. Always a voice of reason, Kelly has really helped me keep things in perspective lately, and has a knowledge and authority I respect. Plus, she's fun to hang out with, what more can you ask? Well, I guess I should also mention that she takes GREAT pictures, which I LOVE. And a HUGE thank you to Nana Noma who stayed home to read her book and hold Jordan, the only thing that even has a chance of settling her down.

And speaking of friends, we had a great dinner courtesy of Karen tonight. She brought delicious lasagne & salad, and stayed for dinner and a chance to visit in the wonderful evening weather. We hope she didn't return home to a flood, since Steven skipped dinner with us to finish up his "little" plumbing project at home. Thanks Karen!

And another big thank you to Emma & Catherine for washing the Saturn. They said they were bored, but perhaps they were just tired of looking at months worth of dirt caked onto the Saturn. Avery chatted with them as they washed, and was convinced they cleaned the car so well it turned from purple to red. I really have been meaning to take it through a carwash for a couple of months now, but never seem to actually accomplish it.

Why is it so horrible to hear your child cry? It KILLS me! Jordan was so mellow and calm until about a month or so ago (after starting the ACTH, but those side effects should be gone by now, and seemed to be gone for a few days already). Ear plugs aren't enough. Is she in pain? Is she unhappy? Is she sick? Is she seizing? Is it the teeth? And most importantly, why can't I figure out how to make her stop?! I thought we were all done with the mega-screaming phase, but apparently not. I was just about to take her back to the hospital tonight, just for the screaming -- to see if they could find something wrong with her that I am missing (and fix it). It's strange how it effects the psyche. I can't think, I can't hear other people, I can't concentrate, I can't read, I can't get anything done, and it seriously makes me a little crazy. It's not easy for me to not be able to "get things done." My list just isn't getting any shorter, and as much as I try, and as well as I've done over the last couple of years (of letting go of the list & reprioritizing things), sometimes it just makes me a little crazy to get nothing done.

I can hardly believe it, but she just dozed off (in her bassinette!), so I better get to SLEEP now -- it's a big day at the hospitals tomorrow. No naps for me.

If any of you have any suggestions, I'm all (ringing) ears.

A Labor of Love

A mixed day, as most are. Jordan was crabby, screamy, & generally miserable today. We don't know why, but really wish we did. Was she in pain? Uncomfortable? Were the screams associated with seizures that we just aren't seeing yet? (High-pitched screams are a general neurological marker for seizure activity, but don't mean anything in and of themselves.) We just wish we knew. Ibuprofen didn't help, but holding her did. Devon pulled out all the stops: the Nojo Sling, The Baby Bjorn, even the MaxiMom carrier (which just arrived yesterday from eBay). We'll find something for each of us to tote her around in eventually.

Today's good news: Despite her crabbiness, Jordan was so "stable" we can hardly believe it. Of course the lab wasn't open, and the orders were a bit screwed up, but the nurses on the Peds floor managed to get her blood pressure (as usual), and her blood for a CBC and BMP. White blood cells were down to 10,000, sodium was up to 141, and potassium is holding steady at 3.5. The table salt seems to be doing the trick for her and her blood pressure is handling it fine. Yippee! Tuesday will be a big follow-up day, with another round of labs (to make sure we aren't going overboard on the table salt), physical therapy, and then another ~1-hour EEG to see how her brain activity is doing after one week off the ACTH. Still no sign of seizures (knock on wood).

We're still trying to dig out from our unplanned week away. My list is finally getting shorter, but I still have a ways to go to get "caught up." Avery got a hair cut (finally), and Jordan's drawers and medical files & supplies are finally sorted, filed, & organized. A couple of projects I started in the hospital are waiting to be tied up, but I'm getting there. Honestly, I don't know why I always think that a stay in the hospital will be like a spa treatment: I'll catch up on my reading, sort though all my photos, sleep all night and nap as I want all day while Jordan is fed, changed, medicated, & monitored my a loving team of nurses & doctors. Somehow it NEVER turns out like that! Not even close! It's often a battle to make sure she gets the medicine & monitoring she needs, and forget the feedings & changes. Then there's the added stress of not being at home to take care of Avery & everything else on the home front. Oh well, I can dream, can't I?

Devon is trying to dig out, too. He'll be down in the basement "laboring" away tomorrow as though it's a regular work day. We're still so grateful that he can be flexible with his work, and when he can't, his company is completely understanding.

Our Week In Pictures

Just remember a hospital is a TERRIBLE photo studio. The light, the setting, the patient, the distractions, etc. There, so now you're prepared for my less-than-impressive photodocumentation of the week at the Hotel Emanuel.

The PICC line (peripherally inserted central catheter) -- straight through the arm to her precious little heart! Seemed scary to me.

We have GOT to get out of that room! Thank goodness for telemetry and red wagons.

Jordan's "E.T. phone home" toe

A room with a view

Can we get a ride home?

Hey, coming to the hospital is pretty fun! But even Avery would rather we all be home, and doesn't want to have mommy, daddy, and Jordan come back to stay for too long.

Home at last, and always looking for new ways to hang out

So This Is Normal

"Normal," of course, is a relative term. It's certainly great to be home, but it's not easy. Jordan did a pretty good job of sleeping last night, and so did mommy and daddy. Hey, anything is better than the nothing we have been getting. Avery went with Nana Noma for the day. It was hot, so they played in the yard and swimming pool, and of course with Daisy. When it was time for Avery's nap, she told Nana that she couldn't go until she finished her "project." She was cutting paper, a new favorite, endless passtime. Nana and daddy didn't have to think twice about where she would come up with an idea like that. Like mother, like daughter. . . .

Jordan is getting back to herself, it seems. She's screaming less, crying more appropriately, and actually sleeping at night and napping during the day. It's relatively glorious. We're still completely off schedule, but we're getting there.

Devon and I tried to get caught up from a week of craziness. A pile of mail to sort through, Jordan's medical stuff all over the house, 7 loads of laundry. Nana Noma hit the supermarket for us yesterday so we could have something to eat (thank goodness). Bank, pharmacy, diapers, and the biggie -- cleaning Jordan's drawers. She's so cushionoid from the ACTH she is wearing size 18-24 months right now. And, as most of you know, she's only 8 months. So, out to the duck barn for the great clothing rotation. It only took a couple of hours. . . .

Devon whipped up a delicious spaghetti sauce made only from veggies from Nana Noma's garden, and some spicy italian sausage "pork"burger (I had tortelinni with pesto). The laundry's still in rotation, Avery finally dozed off, and Devon and I are actually watching a movie while settling Jordan down for the night. I guess we are back to "normal."

Chopped Lizard

Conversations with a 2-year-old are often non-sequitor, and definitely silly, most of the time. Today in the car Avery told me that she calls daddy 'Devon' because he is her best friend. Of course when I asked her what I was, "chopped lizard" was the answer! Daddy played up the 'best friend' designation all night, knowing that soon it would pass on a whim. Sure enough, by the time Avery and I snuggled in for bed, I had been re-designated 'best friend', and daddy & Jordan were downgraded to 'chopped lizards'. Ahhhhhh, the mind of a 2-year-old.

Wa Wa Wa All The Way Home

At least this "little" piggy wasn't screaming her brains out -- I can live with some sobs and cries now (it's all relative, eh?!). It was a long drive home, but we were thankful to make it. However, discharging her at 4:00pm on the Friday of Labor Day Weekend guaranteed a maximum of traffic. I would have liked to have jumped on the LifeFlight helicopter for a ride home. But, we made it, and that's all that matters now.

We were hoping to get home today, and we did. But it was a bit dicey there towards early afternoon. They had started at 04:45am trying to get blood for a set of labs, and by 12:00pm they were still coming up dry. At this point, all of Jordan's care was based on her blood chemistry, and despite even a PICC line, the could NOT get blood. Nurses, charge nurses, IV team nurses, nurses from other departments, and they even seriously considered calling in the LifeFlight team to give it a try. The PICC was plugged and useless, and after more than 10 other venus pokes (and no blood), they decide to milk her heel and call it good (not the most representative way to get blood, especially K, which they were worried about). Anyway, based on the results of the heel stick, the docs decided we could go home! Yippee. Her treatment: blood draws & blood pressure checks every other day, and 1/4 teaspoon salt per day, spread out through 4 feedings per day. The salt thing does not surprise me at ALL. Her sodium has been stable at 132-ish for a couple days now, which is what mine is naturally, and all she's drinking is breastmilk from me. Yes, I'm below the bell curve in that department (low normal is 135), but I have been for years (based on my yearly physicals for work). "You are what you eat" -- right. Since I don't have high blood pressure at all, docs just tell me year after year to eat more salt! And I do, as many of you know -- I'm a total saltaholic.

Anyway, a little worse for wear, and bruised all over her body from all the needles (including her head, not to mention all over her arms, legs, hands, and feet), we are home. She's doing much better in general, and tonight we are starting our new sleep regiment. If it doesn't work in a week the docs will consider meds, but for now we're going to try to keep her off of as many drugs as possible. And we're going to let her cry it out a bit more, so that Devon and I can get a little more sleep, too. We don't really have a routine in place yet since we're just trying to get back on our feet, but the first good sign is that she fell asleep around 11:45pm, and I was able to lay her in the playpen bassinette without her waking up at about 12:30am (we're taking turns in the living room so at least one of us can sleep for awhile). It's been 1 hour now, so I need to do my part and get some sleep, in case she wakes up soon. You'll have to wait until tomorrow for pictures, since I'm going to make* myself sleep now instead of fiddling with them (as I "normally" would at this time of night).

*Unlike Devon, I do not suffer from pillow-induced narcolepsy -- but boy do I wish I did!! At least we all sleep like the dead once we get there! Even Jordan.

Wish us luck, or at least some zzzzzzzzzz's.