27 November 2008

Happy Thanksgiving

Maybe I'll have an exciting story & some photos to go with it within the next couple of days -- or maybe just a relaxing turkey day. Enjoy!

22 November 2008

A Decoration For Nana Noma

When we went to the hospital today Avery felt like she needed to bring nana Noma a decoration to brighten up her room (the flowers just didn't do it for her, even though there were 2 mini-sunflowers in the bouquet -- her favorite). Somehow she decided on making her a gingerbread house for her hospital room, so she & Devon made it tonight & we'll take it to her tomorrow.

I'm really not sure what that face was about -- something serious I'm sure
All done, and it looks great!

Ouuuiiieeee!

Warning: gory picture below

After ~25 years of limping & pain, nana Noma had her right knee replaced (with a titanium one) on Friday. It's incredibly painful, partially because of the surgery itself, and partially because her knee is straight now for the first time in a quarter century (and all the muscles have to adjust to their new "normal" position). She had the surgery on Friday afternoon, and PT showed up at 4:00am on Saturday morning to get her up & walking (with a walker). As long as she doesn't twist it she can't hurt it, but boy is it hurting her at this point!

Defying The Odds

Jordan seems to have croup, or perhaps it just started out that way (it's going around). On Tuesday night she was "barking" when she coughed, but it turned all moist & mucus-y shortly after. Now she just seems to cough when she's sitting up, but lying down she's fine (at least for about 95% of the time). She went to the pediatrician today for a "baseline" check on the cold -- no pneumonia, bronchitiolitis, ear fluid build-up (in the left ear, the one without a tube temporarily). In fact, she's had no yellow goo or fevers, so there's no reason to think she has an infection going on. Just a terrible, juicy, cough. This is definitely defying the odds. I would have guessed she'd be in the hospital by now, but she seems to be on the upswing (knock on wood). But boy is she pathetic & miserable when she coughs! Breaks my heart!

In other statistical anomalies, Mojave is one of the 20% of cats that has a yeast infection in his ears (instead of ear mites). 80% of the time a cat has black goo in his or her ears it's from ear mites -- so we've been treating him for ear mites since he came home in late September -- to no avail. I finally dragged him to the vet this week, and he confirmed my suspicioin -- no ear mites. Fortunately, the cleaning drops & ointment the vet gave us seem to have eliminated the problem in 3 days. Unfortunately, we're supposed to keep up the treatment for 10 days. Ugh!! In case you didn't know this -- cats hate having stuff in their ears -- so it's a rodeo every night. 3 days down, 7 days to go. . . .

And in even skimpier odds, Sierra is one of only 1.2% of cats that had oxalate bladder stones. Unlike the "normal" (98.8%) bladder stones that are nice & smooth, oxalate stones are sharp & shaped like jacks, are hard to feel, and cause extreme pain & bleeding as they poke & cut around the bladder. No wonder she was having such peeing issues! Unfortunately the cause seems to be the catfood she'd been getting for the last year. I had her on Iams for 7 years & she was fine, then our former vet told us to switch her to NutraMax, and voila! oxalate bladder stones for Sierra! Now we have a new vet, who quickly identified the problem, removed the stones & insisted that we get her back on Iams. Luckily I switched her back to Iams on my own a couple of months ago. Hopefully the horrible peeing incident chapter is closed, and we can all move forward with great litter box habits!

20 November 2008

Another Update

Well, besides raking up the leaves (see below), we've been very busy, as usual.

We're sorry to report that nurse Robin is no longer with us. She was traveling from a few hours away and staying in a hotel to be with us each week, and it just got to be too much for her life & family. We totally understand, but we do miss her. So, we've been in the process of finding a new nurse to help us out with Jordan. We're glad to report that Amy has joined "the team" & will be here 3-4 days a week. We're very thankful to have her, as she is a wonderful, caring person!

Good thing for the help, too, as Jordan is sick again. I've thought a couple of times since Tuesday night that we'll be heading to Emanuel (the children's hospital) at any time, but just when it seems like it's time to go she bounces back. She's coughing like a maniac, which requires constant suctioning, and she's miserable. Luckily, she doesn't have a fever, and if she can fall asleep, she can stop coughing. Unfortunately, when she is coughing, she's getting dehydrated, too, because she can't keep her food down. So now we're doing a continuous, slow feed all day, instead of her usual 5 meals a day (each ~1 hour long). Fingers crossed that we can weather this "storm" at home, as I'm in no mood to spend the night in a blue chair in the PICU at this point.

Of course Avery is probably the culprit -- she has a bit of a runny nose. . . probably picked it up at pre-school. Nothing worse than that for her. Jordan just can't handle colds the way the rest of us can! I have a little bit of the snuffles, too, but not nothing serious. I'm hoping it stays that way for all of us.

I finally broke down and went to the hand surgeon about my finger. I made them put 3 lead blankets over me for the x-rays, which was why I was avoiding the doctor. But, after almost 6 weeks I knew I had to do something, because it's still swollen, painful, and I can't bend it. The doctor seemed a little disappointed that I don't need surgery, but I was happy to find out that even though there is a small bone chip in the middle joint, it shouldn't be a long-term problem, and that most of the damage was to the ligaments & tendons. He said to get bending it soon, and come back in 3 weeks. I am making real progress at bending it now that I'm not worried it's going to make it worse. I really need my hand back! Talk about inconvenient!

And best of all, Devon is home from his 3 days at the office in Orange County. Luckily he doesn't have to travel too much, because boy do we miss having him at home!

Leaves, Leaves, Go Away!

After a week of torrential rains, it cleared up last weekend and we were able to get most of the leaves raked up and out of the yard. Phew, what a relief. Too bad the Sweet Gum in front won't be done dropping leaves until mid- to late-December, but at least the rest of the yard is done! Avery was a good helper, mostly with stomping!
Neighbor Sarah came to play (help) too!
And then they were gone (trust me, there's a lot of leaves in the trailer -- more than it looks -- I was the one stomping them down!!)

14 November 2008

Fun In The Autumn Sun

Heather, Katie, and Noah invited us over this afternoon for a spontaneous play date. We need to do this more often -- how does life get so busy? The weather was great, and so was the light, so I made sure to get some pictures of the gorgeous babes.

Avery (almost 5) & Katie (almost 4) took turns in the Dora Jeep.
Silly pose on the sofa
Katie's baby brother, Noah (6 months old already?!?!)
Katie, Heather, & Noah

11 November 2008

All About Jordan

When it rains, it pours, and it has been pouring here lately -- literally & figuratively!

Jordan getting ready for a walk with Devon on Saturday morning, rainboots & all.

We always seem to be pretty busy around this house, but lately it's been exceptionally busy, for Jordan in particular. It seems to come in waves with Jordan: We can go months in "normal" mode -- then suddenly we're in high gear with all the "extras."

Besides Jordan's normal regiment of feedings, medicines, & therapies (physical, occupational, speech, vision, & education -- each week or every-other week with the therapists, and daily exercises at home), she's had 2 hospitalizations and numerous doctor appointments in the last two months, and more on the horizon over the next few weeks.

After her tonsils came out in September (and she survived respiratory arrest from a bad Codeine reaction) her sleeping & breathing improved almost unbelievably. But, the tonsil removal didn't totally solve the "gurgly" breathing, so just to make sure we aren't missing something, I took her to the allergist last week. He tested her for a few foods & the common environmental allergies (28 pokes on the back!), and as usual with Jordan, her test results were totally normal! No allergies, and no more Zyrtec (it seemed to help back in May, but I must admit that when we stopped it last week I haven't noticed any difference or increase in mucus or secretions gurgling around in her throat).

The allergist is partners with a dermatologist, so we set up an appointment with him as well. Over the last few months she has been getting red marks on her right elbow, hip, & knee. I was worried these were the beginnings of pressure sores, and asked every medical person or therapist she saw what they were. No one knew, and no one thought they were pressure sores, but even so, we avoided putting her to rest or to sleep on her right side just to make sure*. The strange thing was, that even when she wasn't on her right side for almost a month, the red marks didn't disappear for weeks. Also, sleeping & resting on her left side didn't cause the marks to appear on her left side. The dermatologist quickly admitted that he didn't think they were pressure sores either, but he also had no idea what they could be, so she had to have a small skin biopsy right there in the office. Poor Jordan, not just more needles (numbing), but an actual cut in her arm this time (it was her 3rd skin biopsy, as well, the first two were for lysosomal storage diseases/metabolic diseases when she was 6 months old -- also totally normal, as are all her tests [except brain MRIs & EEGs]). Those red spots finally faded, and on Sunday she had 2 more small ones -- one on the right hip & one on the right elbow. The biopsy results came back today (after an independent second opinion no less): non-specific. Of course, just one more of Jordan's little mysteries!

It seems to be a particularly harsh cold season already, and Jordan is suffering like everyone else, only worse. She's already spent 4.5 days in the PICU in October for nothing but a cold, and it hasn't fully resolved yet. Two weeks ago her ears were draining a mucky yellow goo -- this was good -- it was draining through her T-tubes instead of backing up in her ear & causing an infection! But, as all good things, it had to come to an unfortunate end. The T-tube in her left ear extruded, so last week I had to take her to the ENT & have him remove it from her ear canal (it had been there for a week & hadn't come out on it's own). T-tubes are supposed to be semi-permanent, and last a couple of years, rather than a few months, like more traditional ear tubes. But Jordan has only had them since February, so the one that extruded only managed to stay in place for 8 months. Ugh! Also, she had a bit of granulation tissue on her eardrum, so she's been on antibiotic/steriod drops for over a week. She went back to the ENT yesteray to see if it has healed (almost), and in 3 more weeks he'll decide when to replace the tube. She frequently has drainage from them, which prevents infections, so it's important to keep them draining. Luckily it's a simple, outpatient procedure.

Last Monday she had to have her blood drawn for the neurologist. We see him next week. We've had great success over the last year controlling her seizures with Keppra, Depakene, and Tranxene (much to the medical world's shock & amazement), but we have to monitor her Depakene levels every 3 months to make sure her dose is still therapeutic. Equally important, we have to closely watch her liver function, as liver failure can be a nasty side-effect of Depakene. In the past getting blood from Jordan has been a nightmare (and starting IVs is not much easier), but we totally hit the jackpot this time! The phlebotomist at the lab on Monday was the only that had never drawn Jordan before, and she got her bleeding like a stuck pig on the first try! I was amazed, and for once she got ALL of her labs drawn all at once (Depakene trought, complete metabolic panel, complete blood count). For once we'll have a great set of data when we see the neurologist next week!

Unfortunately, we have been seeing seizures here and there lately. Not alot, and not serious ones, but but enough to make us wonder if the "honeymoon" of seizure control is near. Having seizure control with her has been our saving grace this past year -- she really couldn't function at all when she was seizing all the time, so we're desperate to prevent seizures at almost all costs. But, on a side-note, we're also very interested in seeing what her alertness would be like without her Tranxene. It was never intended to be a seizure med for her, as we started it as an anti-anxiety med when she was about 8 months old, after a brutal 8 weeks on a steriod (ACTH) for infantile spasm seizures (which are one of the few types of seizures that can cause brain damage). It calmed her down, but perhaps a little too much. And desperate to get & keep seizure control, we have continued her regiment for the last 2 years. But now, since the Depakene seems to be the major player in stopping her seizures, Devon & I both want to know how much more awake she would be without it. Could increased alertness help her see & learn a little better? We've decided it's worth trying! Unfortunately, it's very difficult to get off Tranxene, and I wouldn't be surprised if it takes up to a year to wean off. I hope that the neurologist is supportive of this idea.

Things are changing all around, and along with some minor siezures, we're starting to see evidence of reflux again. Since we started her on blenderized food (instead of formula) over a year ago her constipation resolved, and her reflux followed suit. She's been off her Zantac since May & doing great, but now the painful burps & hiccups are back. We're starting the Zantac again to see if it helps, and will be off to see the Gastroenterologist next week. I hate adding medicines to her daily regiment, but I hate to see her suffer even more, and Zantac side-effects are relatively minor compared to some of her other meds.

She also has an appointment with the Neurometabolic team & the dentist in December. Never a dull moment!

On the school front, Jordan will "age out" of her Early Intervention program when she turns 3 (30 December), so now we are in the early stages of figuring out how we're going to get her to pre-school. We met with the school's nurse last week as a very preliminary step to getting her into the classroom. I can see that it is going to be a logistical nightmare, if nothing else, and I am nervous (especially in this economy) to see how the school district is going to handle her special needs. Of course they are federally mandated to accommodate her at school, but that doesn't mean that they are funded to do that (nice trick of government, eh?). Devon & I are determined to fight for her rights, but we're hoping it doesn't come to that. We just believe that she deserves to be in a classroom with other children, or at least to give it a try & see how it goes. But everything from getting her there to what she will do while she is there is up in the air. Obviously someone will need to go with her -- a nurse from the school? Provided by us? We'll just have to see what the logistics will be when we get to her IEP meeting (individualized education plan).

It's only going to keep "raining & pouring" around here, through November right into December. And right around Christmas-time it'll be time for "baby brother" to join the chaos! Never a dull moment!

It's enough to wipe a girl out! Jordan is an even better sleeper since having her tonsils out in September, and we sleep better, too!
*Pressure sore scare me to death -- Christopher Reeve eventually died due to infected pressure sores -- and he had to have some of the best medical care in the world!

08 November 2008

Happy Birthday!!

HAPPY 35th BIRTHDAY DEVON!!!


Yes, Devon turned 35 on Friday! Grandma Linda & Grandpa Earl were on hand to join in the festivities. Avery loves birthdays, and was so proud of her cupcakes & birthday presents. Nana Noma helped her make mini-cupcakes & pick out a t-shirt for daddy. I helped her pick out a new belt for a gift. But the one she was really, really excited about was the one she picked out herself: A SpongeBob Squarepants jump rope. We're not sure why she chose this, but she couldn't have beamed with more glee than when daddy opened that present (first, of course). She's having a blast trying to jump with it. . . .

05 November 2008

A Cold Rainy Day

You know the short, wet days of winter are upon us when we get out the box of marble tracks & spend the afternoon in the playroom. Avery is getting very good at building her own, and I'm getting better at letting her :-).
I guess you're never too big to play in a box. Well, until you are too big to fit into a box, but Avery's not quite there yet.
Jordan had a nice, restful afternoon watching us build the track and race the marbles, between naps that is.

04 November 2008

Crazy Days

Usually it's "no news is good news" here on my blog. Over the last few days it's been "no news because there's no time to update." I'm hoping to catch up soon -- there has been a lot going on. We are all well, but just barely keeping our heads above water. . . . Tomorrow is going to be another busy day, too, but maybe by tomorrow evening I'll have a chance to really update. Or not -- we'll see, but don't lose heart, we're still here!