Can We Build It? Yes We Can!

"Bob The Builder" was the theme this weekend. While Avery, Kate, Ed, & I were at Dozer Day, Devon was starting his weekend project: Building the "fence" to hide the new lawn and the garbage cans & recycle bins from the street. This is all we're planning to do at this time, while we consider extending the fence all along the edge of the property. This place is always a work in progress! Note: Devon did the whole fence all by himself, except for the help Avery supplied (see post below).

BeforeSetting the posts in concrete -- perfectly level

The first panel is upStarting on the side panel

Finally, the gate, also hand-crafted by Devon

Devon & Avery The Builders

The Shriners Hospital Children, Portland

Phew, we survived the Shriner's visit on Wednesday. The worst part, of course, was almost forgetting about it (until 9:00pm on Tuesday night, glad I checked my calendar), then not getting much sleep the night before in order to get ready & be there by 8:15 am (a truly ungodly hour for this family to be anywhere).

I was afraid they would see too much of Jordan's neurological problems* & tell us to get lost, but they were very helpful. They immediately did spine & hip x-rays (she's never had those before), and found that although she arches to the right (ALOT), her spine isn't damaged & no scoliosis yet. The doctors even suggested that with low tone she'll be at a lower risk for scoliosis than if she was arched and stiff/spastic all the time. Then they sent us to the photographer to get full body pictures for her file (oddly, still used film?!?!? huh? didn't seem very efficient), and had her feet molded for ankle-foot orthoses (AFOs). Then we scheduled an occupation therapy (OT) & physical (PT) evaluation for 31 May, which is when we need to be back for the AFO fitting & instructions. Then, the doctors will see her back in 6 months. It all took about 3 hours (very efficient despite the actual film photographs), and it was soooooooooo nice to be able to do things right then & there, instead of running all over town & then having to make another appointment to come back.

Jordan was NOT happy about getting the casts for the molds made -- I wonder how she will like the actual AFOs. . . .

That's one mad Jordan!

*Shriners Hospitals for Children is a network of 22 pediatric hospitals in the U.S., Canada and Mexico providing specialized care for orthopaedic conditions, burns, spinal cord injuries and cleft lip and palate. All services are provided at no charge. Eligibility for care is not based on financial need or relationship to a Shriner.

Don't Mess With The Tummy

I had a nice day mostly to myself on Sunday, but set myself up for a disaster on what most of you probably called Monday (I called it barfday). I accidentally gave Jordan too much Compleat with her formula on Sunday night, and she was out to get me. It was possibly the worst day of barfing she's ever had, and believe me, that's saying a lot! To top it off we had to drive the Saturn, and the car seat in that car is really brutal on her tummy (and sends things flying out both ends). Did I mention how badly she was barfing, and the unbelievable poop mess she made in and all over the car seat?!?!?

So, after putting on my third shirt at 9:30am we loaded up and headed to the dentist. Avery was very distraught about impending appointment, but they were wonderful and she had a great time (and made the No Cavity Picture Board). I, however, was much more worried about Jordan; her barfing, her oral aversion, her gag reflex, and the placement of her incoming teeth. But the dentist was fantastic with me & with her. He listened to me and my concerns & explanation of Jordan for about 15 minutes (while Avery was playing with the hygienist equipment & getting her teeth cleaned). Then he leaned her back in her Kid Kart, looked at & cleaned her teeth, and declared her a better patient than all of the 2-year-olds he's ever seen. And, he said that her incoming teeth are just fine -- we just have to help them come through as much as we can (and he gave us a couple more things for her to chew on, not like we don't have 50 different things already, orally "official" or not, that don't really work).

Much like insisting on wearing her shoes on the wrong feet and sunglasses upside down, Avery HAD to watch Lilo & Stitch on her tummy instead of her back while waiting for the dentist part of the check-up.

Keeping busy while Jordan was having her check-up.

The dentist was so fast & I was so focussed I didn't get a picture of him working away.

So, with a successful dentist appointment down, Avery went for a play date at Kate's while Devon & I took Jordan to her 6-month ophthamologist appointment. 30 more minutes in the Saturn (cough cough barf barf, but thankfully at least, by that time she was all pooped out). The doctor said that there is no optic nerve damage, no sign of metabolic or genetic diseases, that her cataracts aren't getting worse, and that she is slightly near-sighted with a left-eye astigmatism. However, since she (probably) has cortical vision impairment, she's not going to start her with glasses, eye exercises, or patching. We'll go back to see her in a year. Then it was 30 more minutes of cough cough barf barf in the car. . . .

But, with all the barfing all day long, Jordan saved her best trick for last. On the way out of Kate's driveway (from picking up Avery), Jordan projectile vomited out of her nose, ONLY!!! I've never seen nose-only barfing before. It looked painful.
So, since Monday night I've been extra careful & taken extra care not to mess up Jordan's Compleat/formula ratio. By Tuesday she was back to normal. Proof positive of the sensitivity of her tummy.

Quality Time With My Labeler*

What a great weekend I had. I spent both days cleaning & organizing, and didn't get disrupted every 5 minutes by Avery & Jordan -- they were busy keeping Devon busy. On Saturday they worked outside on the yard setting stones along the side of the house, weeding, and mowing. Meanwhile I cleaned out a HUGE tube of toys from the playroom and organized the rest, completely organized the mud room, scrubbed the fridge inside & out, then finished my "pictures"**. I went through 2 labeling cartridges, and loved it. Sunday was extra special, too, because I got homemade orange juice, cinnamon rolls, fresh flowers, and a 3-hour nap while Devon took the girls down to the farmer's market, right next to a favorite playground. We also had a visit from aunt Janet & uncle Charlie, and, oh yeah,

TWO TICKETS TO THE POLICE CONCERT IN SEATTLE NEXT MONTH!!!!!!

The picture project -- this is about half of them, half-way done. I'm now caught up through the end of April 2007, for the first time since before Jordan was born. Phew!!!

The rocks Devon, Avery, & Jordan (supervisor) laid on Saturday, to match the pathway beside it.

The first mowing of the new lawn. Despite success so far, Devon doesn't want to jinx it by claiming success at the sod laying in April. I think it's succeeded, and our water bill shows the effort (3X what it usually is in the month of May).

Avery found her shadow on Saturday afternoon & wanted to share it with everyone.Oops. She's learning to walk well in her flip flops finally, but still loves to be a little silly in them. At least they were on the right feet this time -- most of the time she insists on wearing her shoes on the wrong feet. Swinging at the park with daddy, after shopping at the Farmer's Market with Devon & Jordan. Jordan was the hit of the market snoozing in the wagon, but wasn't too popular with Devon because of the gigantic diaper blowout on the way there. Don't ask where he laid her down to clean it up (okay, it was the sidewalk). I was glad I was at home having my Mother's Day 3-hour nap! Gorgeous fresh flowers from the market, for nana Noma and me.

*paraphrased from Monica on an episode of Friends

**It's my personal little OCD issue -- I have to print, label & organize all my pictures, and I hardly have time for that

Generic Jordan Medical Update

It's been quite a busy couple of weeks on the medical front, so here's an update:

Two weeks ago, at the "end" of her massive snot festival cold, she was diagnosed with a raging ear infection, which led to a 10 day treatment of amoxicilan. Her follow up appointment on Friday revealed the infection was gone, but significant fluid build up on her ears. Now, on a "normal" kid, 1 ear infection at age 16 months, with residual fluid wouldn't even be a blip on the radar, but the pediatrcan said that if the fluid isn't gone in 3 more weeks it's off the the Ear, Nose, and Throat doctor. She hasn't seen an ENT yet, but hey why not, whats one more specialist? Then she was right into a discussion of tubes, and adnoid removal, etc. . . . Because of her mucuos issues & (minor) anatomical dysmorphology (but not enough to be genetic syndrome material), she needs all the help she can get clearing and draining her ears & nose.

Then I asked if the fluid in her ears would be making her such a raging, angry beast the last few days, or if that was more likely the erupting teeth. Because she doesn't eat orally her teeth are sslllloooooowwwwwwww to come in. And 3 have popped through this week. Slowly. Also, her teeth farther back in her mouth seem to be erupting very low on the gums. Very low. So, it's off to the dentist she goes on Monday. I tried to prepare them for Jordan's special needs, but they'll just have to watch their fingers and figure it out when she gets there (she's got a heckova bite when she doesn't want you 'playing' in her mouth, but at the same time seems to like having her gums rubbed -- it's a very thin line).

After the dentist we'll be off to the pediatric ophthamologist for her 6 month check-up. So far she doesn't have any physical or mechanical problems with her eyes (she should be able to see), but beyond responding to light, she doesn't seem to use the appropriately. It could be delayed development (like a newborn), or it could be cortical vision impairment (CVI; her eyes see, but her brain doesn't process the images). Her cataracts are still very small & shouldn't be impeding her vision.

Thursday she had a follow up with the pediatric neurologist. He definitely refers to her condition as Lennox-Gastaut Syndrome now, not the greatest syndrome in the world to have. That's about the first thing anyone has really "diagnosed" her with, but it's a pretty easy fit after the Infantile Spasms. She performed well, and showed him many of her odd movements. He agreed with us that some were seizures (myoclonic jack-knives), and many others weren't. She's on a low dose of Keppra right now, but we're going to start increasing that every week until she's up to 2 ml per day. He also says she'll probably end up on the Ketoenic diet, and that its usually a very good fit for LGS management. It really doesn't matter what she eats because of the tube, so the keto diet will much easier for us than most other parents.

And speaking of food, her Compleat came today. Now we have to break her & us into a new food & feeding schedule. I don't know how her tummy will react, and I'm not anxious to add tummy troubles to the mix since she's already so irritable. I think we'll transition slowly from her baby formula to this.

And, last but not least, her Keratosis Pilaris seems to be mellowing out a bit, with diligent Urea/Hydrocortisone treatments twice a day, and cleanser, not soap in her bath. The dermatologist told me to try the cream mixture for 6 weeks to see if it helps (we're on week 2), and if not, give up, there's nothing else we can do about it.

It'll be another busy week of appointments next week, too.

Life In The Gardens

Devon has really been attacking the yard for the past couple of months. Putting in new sod (which flourished & is our new favorite spot for picnics), worm hunting, (i.e. weeding, weeding, weeding). . . . It's really taking shape out there, and just in time for the great summer weather that's on its way.

Diggin' away. He did the whole terrace on Sunday morning, and I think the neighbors are just as happy as we are (it was a real jungle out there, believe me).

Avery's bug collection. She doesn't put a lid on, and lets them go every couple of hours*

Avery's peas that nana Noma helped her plant. I can't wait to eat them, fresh off the vine.

We finally found a swing that Jordan can use. We all LOVE that she has a place on swingset with Avery.

Jordan was content for a few hours in the wagon, watching Devon & Avery work.

Taking a break for 3:00 o'clock snack-time in our new favorite picnic area, under the tree on the new lawn.

How do you end a long day working in the yard? A blender-size "foozie" of course (that's Avery-speak for "smoothy").

*I took her to Petco the other day (as Kate's dad Ed calls it, the Hazel Dell Zoo), and walked around looking at the animals there: Fish, snakes, lizards, frogs, hermit crabs with fancy painted shells. But when we got to the area with the mice, rats, hamsters, guinea pigs, chinchillas, rabbits, and cats, she was sad. She kept telling me they were sad and just wanted to get out.

Family Fun

The weather was perfect on Monday & Tuesday for a visit from Devon's Aunt Lynn, cousin Crystal, and her 2 children Heidi (23 months old) and George (5 weeks old). We spent the whole day & evening outside, going back and forth between the front and the back yard. I thought it was a little cold, but the girls couldn't get enough water: The sprinkler, the water table, and the wading pool. A great time was had by ALL!

Kate was here when they arrived and was quite taken with little Georgie. She was devastated to leave, and allegedly talked about him for the rest of the day & night.

Earlier Kate & Avery had a picnic lunch on the new lawn.

Kate & Avery playing "witches" in the sprinkler

Heidi borrowed a swimsuit & jumped right in the sprinkler fun. Where's Heidi?
Heidi's decided that Zachary (Avery's doll) shouldn't have to suffer the super-soaker diaper like she did. Heidi loved this chair, so much so she took it in the wading pool with her.

FLASHBACK: And it's not just popular with cousin Heidi. Here's a picture of cousin Nathan in May 2006 lounging in it, too.

Splish-splashing in the water table.

FLASHBACK: Avery & Heidi playing in the sand box in May 2006, during uncle Bryan & cousin Nathan's visit.

FLASHBACK: Cousins Heidi, Avery, & Nathan enjoying dinner together in May 2006.

Jordan had a couple of good naps.

Heidi's first ice cream (Tillamook Mudslide, yum!). Avery the seasoned ice cream eater.

Sweet baby Georgie

Super slider HeidiSuper swinger Avery

George & Heidi's "mormor*," Lynn, gets lots of snuggles with Georgie. She's been hanging out in Seattle with Crystal & Jarrod & the kids for about a month now. She's been a great help, and also had a chance to visit (her brother) Earl and Linda at their new place in Hope, B.C., and another old friend in Victoria, B.C. Avery takes a look at the wee one. It's hard to believe how small they start out

*"Mormor" is Norwegian/Swedish/Danish for "mother's mother." Likewise, "farfar" means "father's father," and you guessed it, "farmor" & "morfar" mean "father's mother" & "mother's father," respectively. Each grandparent has their own name, and it might be different for different cousins.