Tiddy-Yup, Tiddy-Yup

Every day I try to carve out some special alone time with Avery. Some days are better than others. Whether its hanging out on the deck or in the back yard, taking a trip to the store (even Winco), or hitting the park, pool, carousel, fair, mini-golf, etc. I don't do as well as I should with this, but I try. Some days are just too busy or I'm just too tired, and some days we literally run out of time. Some days there's no way to ditch Jordan. Some times the chaos rules, and the phone rings all day long, and bedtime stories and snuggles are all we get (but we make the best of them, and it's easy for both of us night owls to drag things on for quite awhile. . . .). But I do try. Corny & cliche as it sounds, I absolutely cherish this time together. Avery's very protective and loving of Jordan, and not outwardly jealous, but I'm sure that she gets tired of "hold on, I just have to feed Jordan, change Jordan, hold Jordan, get Jordan her medicine, take Jordan to the doctor/hospital," etc.etc.etc. Jordan takes up and extraordinary amount of time & work, and it's hard on all of us, whether or not we realize it, or vocalize it. So it is important to both Devon & me to make some special time for Avery as often as possible.

So tonight, while Nana Noma stayed home with a sleepy Jordan, Avery & I hit the merry-go-round at Jantzen Beach. She picked a small white horse she called "Ginger" (we discussed this on the way down & she stuck with her decision). I don't think that the carousel dude believed she was 2, though. He seemed suspicious (what can I say, she's advanced for age -- or at least tall). Then we hit the Baskin Robbins, and after perusing all of the ice cream, she picked Oatmeal Cookie Crunch, all by herself (she LOVES oatmeal). Mommy had an all-time favorite: Raspberry Cheese Louise. We both had kid-size scoops. And, extra bonus, when I grabbed change from the change basket on my way out the door, I also happened to have grabbed a carousel token. I found it when I went to pay for the ice cream, and decided we better put it to good use. So, we went outside and had a "picnic" with the ice cream, and then went back for a second trip on the carousel. This time Avery picked a different small white horse; she named it Silver. Mommy got dizzy, and the attendant still seemed doubtful that she was 2 (a parent rides free with kids 2 and under, so he must have thought we were scamming).

Even with our night out, she was hesitant to let me go after "Heidi book" and snuggles at bedtime. She's pretty manipulative, already. We might be in trouble.

[Tiddy-Yup = Giddy-Up in Avery speak]

One Leg At A Time

With a few days of calm under our belts I've had a chance to reflect on the last couple of months. Time sure flies, doesn't it? Back in early July we didn't even know Jordan was having seizures, so learning about them, and how urgently we needed to stop them took us by complete surprise. I have to admit that they didn't seem that bad to me, and that I didn't understand the seriousness of them for some time (mostly because Jordan's first neuro was useless at communicating anything meaningful to us).

But the infantile spasm phase of our lives has passed (for now, knock on wood they don't return), and it's time to step back again and look at the whole picture. It's a little more comforting now that she's not screaming her brains out 22 hours a day. That was torture, and it was hard to see past the next hour most of the time. But now it's time to remember that we have a very sick little girl, who's over 8 months old, but is still acting like a ~2 month old. We're thrilled to see the smiles, the movement, the eyes "looking" around, the sleeping through the nights, all of those things that you're thrilled about when your new baby does them. She was even sucking on her own hand today while up on my shoulder, and it was amazing to me. But it's also sad, because at this age she should be sitting up, holding her head up, rolling over, beginning to crawl, tracking things with her eyes, interacting with toys and people, smiling back when someone smiles at her. But she doesn't. We forgot about all of those things while she was screaming -- we could hardly think of where the fridge was in those days, let alone her developmental level. But now that she's calm again, the reality of our overall life is snapping back in our face. Babies all around us are sitting, smiling, interacting, and it breaks my heart. I certainly don't want anything bad for those families, it's nothing like that, but I certainly do want that for ours. And it's pretty doubtful we'll have it. It's definitely sadness, perhaps a little bit of jealousy & envy. I don't feel like I have anything to share with these parents, so I don't say anything. Well meaning strangers say things like "oh, look at those fat rolls, what a healthy baby," and I cringe and bite my lip. Or "look how sleepy she is," not knowing that she's wide awake and that is just part of her look (her condition).

So, now that the spasms are under control (for now, knock on wood), I'm gathering medical records, ordering faxes, and booking flights to take her to specialists all over the US, and I'm back in the business of figuring out what's "wrong" with her. Many other parents of special needs kids tell me that I should just give up and love her. But certainly they must know that I DO love her. We love her more than anything (okay, tied with Avery) and that's part of the reason we're doing this. Perhaps if we know what went "wrong," we'll know how to treat it or deal with it. And if there's no treatment today, perhaps there'll be one next month, or next year. We just need to know what to look for. Many of these ultra-rare diseases are being discovered and "fixed" daily. But I know what those other parents are saying, too, and I know that a day will come when the diagnosis won't matter anymore. We'll just get up and put our pants on one leg at a time, just like everyone else -- only the pants will look entirely different.

Hundreds of times a day I look into her great big blue eyes, and see those long batting eyelashes, and gently rub those rolly polly cheeks (that sometimes spread into a grin), and I don't want any other baby in the world. Just Jordan.

Devon Who?

Wow, what kinda weirdness is this. It's 9:15p.m. and everyone's asleep, except me, of course. I'll definitely try to take advantage of this situation, though.

Jordan slept all night -- until 06:15! Yippee. (Too bad I couldn't fall asleep a little earlier last night and take advantage of that).

Avery found her painting supplies from the binky fairy this morning. She painted for hours, herself included. One painting was of peanut butter and jelly sandwiches, she said (brown & purple), but apparently her sweet tooth took over because soon the whole page was brownies (you guessed it, all brown).


Avery went to Jaynie's for a couple hours this morning to jump on the BIG trampoline, watch movies, and do makeup (blush was all she wanted). However, part way through it she decided she wanted to head home, so Jaynie came with her and they played here for awhile while visiting with Nana Noma & Jordan (and I slept). Thanks Jaynie!!! You're still on the "best friend" list, and Avery talked about her adventures with you all day.

Jacoba stopped by for some Jordan snuggles and, apparently, to be mauled by Avery. Avery is such a chatterbox, and snuggler, too. We had a nice visit on the deck while Avery painted, and jumped, and painted, and jumped, and ate, and jumped, and painted, and jumped. . . . Thanks Jacoba!!! You're still on the "best friend" list, too.

Nana Noma left to run some errands and came back with DAISY! This made Avery's day, although Mojave has been engaged in 9 hours of "cat chess" at this point, and we haven't seen Sierra at all (she's probably behind the water heater downstairs). Avery's thrilled, and Daisy settled right in for a nap on Avery's bed this afternoon (then spent most of the day in her room in the closet or in the crib).

Jordan & I did the blood pressure/lab run up to Salmon Creek Hospital. Boring. The lab tech got blood on the first try, again! Yippee. (Is it pathetic that that can make me happy these days?)

Terry stopped by with dinner from Jessica. Pesto pizza and pasta, my all-time favorites. Avery was happy to get to see him since he was at work while Jacoba was here today. Jordan & I were at the hospital (he came by early, so we missed him). Thanks Terry & Jessica, I really appreciate it (especially since I'll just eat cereal for dinner if I can't think of something else. This was delicious!).

Avery & Nana Noma went to swim lessons & Avery did a great job! We'll try gymnastics again when she's a bit older.

Then, to our happy surprise, Jacoba & Terry stopped in again, this time with dinner for tomorrow night! Japanese vegetarian curry. YUMMY. And, they brought Diva & Max with them, so Avery got to play with the dogs for a little while. She likes to look, not touch, but they settled down enough in the end for her to pet them, "soft & gentle." She was tickled pink!!!

I even got a chance to make some phone calls to doctors and complete some errands, too.

Who had time to miss Devon? Just kidding, we missed him lots and can't wait until he's back home.

Thanks everyone for your help!

Never A Dull Moment

I got one hand in my pocket -- Jordan managed to get her hand in her own pocket! She couldn't have done that with the 2X4s she had for arms last week.






Playin' in Nana Noma's yard, waitin' for the pumpkin to turn orange, eatin' tomatoes off the vine.

























The little drummer girls







Cha cha cha, Jordan.


















Avery's nature hike with Henry.







And what's a weekend without a costume?

To The Rescue

Hopefully the stars have aligned in our favor this week. Devon is off to Bellingham (Washington) for a super cool training course (3-D software), and Nana Noma has moved in to extra-help out. I'm starting to think that the timing of the Tranxene is perfect. Jordan has really mellowed & is snapping out of beastdom, and Avery is "such a big girl" these days she's even willing to give up her ahhhhhhhs. I know I'll sleep a little better knowing that Nana is here to help out if we need it. 3 knocks on the floor, that's our signal to her. Avery's dying to try it out, but sleeps longer than Nana, so Nana's always upstairs when Avery is awake to knock.

Other friends have also signed up to pitch in. We couldn't be happier to have their company, and are truly grateful for their time, efforts, & concern. Some are bringing dinners, some are coming to watch Avery or hold Jordan, and some are taking Avery to their homes for mini-adventures. She's very excited about everything this week. An extra bonus is that this will make the week go faster, so daddy can come home sooner -- we miss him already!

Wish us luck on our "solo" week!

Ahhhhhhhh-ff They Go

We've been trying to convince Avery that she doesn't need her "ahhhhhhs" anymore, since she's "such a big girl." I have been telling her for months that the day will come when we'll have to gather them all up and mail them to the new babies so they can have ahhhhs, meanwhile Nana Noma has been telling her that when she's done with them we'll put them in a tree and the binky fairy will come take them away and leave a special present for Avery. Yesterday she mentioned a couple of times that she was "such a big girl" that she was going to give her ahhhhhs to the new babies, but then quickly recanted.

Today she told me the same thing -- and seemed much more serious about it. She helped me pick the bag, put the ahhhhhs in herself, wrote her own note to the binky fairy & the new babies, and insisted I hang up the bag in the tree right away. Needless to say, this binky fairy made a late evening trip to Target for painting supplies.

Sadly, she did save out one ahhhhhh for bedtime. Oh well, at least it's a step in the right direction. [We've recently instigated two new rules in the house: that she can only have her ahhhh in her bedroom, and that she can't talk with it in her mouth. Its an adjustment.]

Avery writing her note to the new babies. I think it's Arabic, she's even writing it from right to left.

Since we're all so tired and have other things at the forefront of our minds, we're letting her set the pace for this. Frankly, I don't really care about them for dental or developmental reasons, and they certainly do soothe her for naps & bed, but I don't particularly like to see them, and I can't stand to listen to her talk with one in her mouth. Hopefully this will be similar to when she decided to potty train herself in mid-June, during the week before Jill & Matt's wedding (aka the week of insanity, and believe me, potty training was the last thing we had on our minds at that time -- but she did it anyway).

It's true, Avery is "such a big girl" -- and getting bigger every day (smile, sob). I'm thrilled to get rid of them, but at the same time sad to see them go.

. . .Then Build A Better Mouse Trap

Or at least a silly binky. Devon dis-assembled one of the gazillions we have at home and came up with this. Devon seems to have the best luck getting her to use a binky, probably because she doesn't like his thumbs. He says it's because of his exceptionally hard nails, I think it's the hairy knuckles. . . . Jordan still would rather suck on mommy's & Nana Noma's thumbs. Oh well, at least she's able to suck now period. I'm not sure why she likes it and uses it, but, hey, whatever works. Devon thinks she likes it because the nipple is longer this way. It's probable that it does not pass any sort of safety test, so we can't really leave her alone with it.

She was so happy she even gave us a grin. So nice to have her back! We hope there are many more smiles & grins to come (even though they must be hard to do through all the rolls of fat).

A Whole New Jordan?

Devon works his binky magic on the new & improved Jordan, who finally remembers how to suck without screaming every 5 seconds. Notice that she's asleep, and that gravity is on his side.

Devon and I were a little bummed yesterday when we met with the neuro and he told us Jordan's new anti-seizure anti-anxiety medication would take up to two weeks to work. We struggled with the idea of giving it to her, but were partially relieved to at least give it a try, with the doctor's blessings of course.

HOLY COW!! What a transformation! She calmed down very quickly last night, slept from from 10:30 to 6:00 (with a quiet, one hour break between 01:00 to 02:00), and seems practically back to "normal." All this with 1/2 dose! Devon joked that I was going to get worried that she was suddenly too calm -- but it was too late, I already was. Mostly I worry that we're masking some underlying problem by giving her the medicine (e.g. her tummy hurts but now she can't cry out to tell us). Mind you, when she was screaming for the past 6 weeks we couldn't figure out what she was trying to tell us, so maybe she really is feeling better on the Tranxene. I know I'm feeling better (and that worries me, because the last thing I want to do is medicate her to make me feel better!). It's tough, I tell you.

I guess I should also mention the other things that have improved since her first half dose last night. Call us crazy, but we both feel like she's crying more appropriately & more "normally" (instead of shrieking constantly), she's giving us grins & smiles, she's cooing again, and she seems to be "looking" around and taking in her surroundings. Her arms and legs are relaxed, her ankles are bent, her hands open and close, and she's even putting her hands up to her mouth (even though she isn't sucking on them unless they are propped up there so they can't get away). She hadn't been doing any of these things for weeks. She has periods of quiet alert time, finally, too. And did we mention that she slept WELL last night, and even when she was awake she was hardly fussy. Her blood pressure today was a little better than it was on Thursday, and I didn't get a call from the doc on Thursday or Friday, so her electrolytes must be doing fine.

So, even though I'm a little worried about over-medicating her, I'm glad to see that she's emerging from her shrieking stupor, and becoming more like a "normal" kid, with more varied emotions and actions, and hopefully some development to follow.

Just Like Starting Over

I guess today we can chalk up to a good day, medically speaking. We had our big appointment with the pediatric neurologist and learned a whole lot about Jordan from him. Most of it wasn't bad, so I guess that means it was good.

She is officially seizure free (knock on wood). Her EEG was clear of all seizure activity*.
*She is having some myoclonic seizures, which are harmless. We all have them while sleeping (to some degree), whether we know it or not. An otherwise "normal" person would not be treated for myoclonic seizures.

Her EEG is now "normally abnormal." Her wave frequencies are slow, and that is expected in someone with developmental delays, but her brain is no longer disorganized and mis-firing. During IS, even if seizures aren't seen, the brain is always mis-firing, and that prevents basically all motor and cognitive development (in fact, most kids lose what they had). For now we don't have to worry about that, although she is at higher risk for developing other types of seizures as she ages, and IS is known to come back in some kids. So, we're not totally out of the woods, but for now we've got a clean slate.

We started tonight giving her a new drug called Tranxene. She's getting a small dose, and we will increase it after a few days. It's very benign (many anti-seizure meds are not, and you have to be monitored closely for kidney stones, kidney failure, liver failure, etc.etc.etc.), and it will help with her "anxiety" as well as help to hold possible future seizures at bay. We did not want to just medicate her because the doc said to, but after some internet research, and some comments from other parents with seizure-affected kids, combined with our discussion with the doc today, it was clear that this was a good choice for us. Hopefully it will put her at ease a bit, and prevent any other seizure types from developing, without putting her internal organs at risk.

We do not have to even see the neuro again until December, as long as she doesn't develop new seizures. Wow, from weekly to quarterly all at once -- that's quite a jump!

The neuro saw some of her leg & arm tremors today and assured us that they are completely benign. Phew, one less thing to worry about.

Jordan does not have to go on any (scary) long term maintenance drugs to control and prevent seizures.

She has developed a pant, (exacerbated by screaming,) that bothers us. We were hoping it was just due to the excess weight gain, but the neuro thinks that it could be an overall characteristic of her condition, and that breathing, like eating, might become a problem for her (okay, clearly this was not good news, but I'm still holding onto the weight gain idea, since the panting started just as she began bloating from ACTH).

We'll have to wait 3 months (beginning of December) to get her to a "baseline." Then, in about 6 months after that (around June 2007), we will have a much better idea about how delayed she will be and what we can guestimate for the future. So, we'll just have to be patient for another 9 months or so to see where we think she might be headed.

Flash, no flash, you decide (dark; no outside light through the winow)

On other fronts, we got an appointment with the neurogenetic clinic at OHSU in mid-October. As with feeding clinic, we will be in a room with~5 doctors and other neuro & genetic specialists, all trying to figure out if they know what is affecting our little Jordan. We also got an appointment with PRIDE, an Early Intervention Program, at the beginning of October. With EI she'll qualify for all types of therapy (which she already gets for medical necessity, but hey if one is good, two must be better, right?), provided by the school districts to help kids get off to the best start they can for education . The facilities there are very new, and great, and the staff comes highly recommended.

Getting rid of the Infantile Spasms has cleared the slate and is allowing Jordan essentially to start over from scratch. So, over the next couple of weeks we should see an improvement in her behavior, and over the next couple of months we'll know about what her "baseline" condition is. We'll be crossing our fingers that she'll be able to make up for some lot time, but we'll just have to wait and see.

For reasons unbeknownst to me, daddy decided to dress Avery like her "sherbet" room today, right down to the yellow socks (baseboards).

Tough Decisions

This is one of those times I wish one of us had gone to med school. Even so, I'm not sure our choices would be easier, but at least we might feel more informed. I spend most of my non-doctor waking hours researching on the internet, and connecting with others who have "been there, done that" -- and still, no easy answers. This Jordan certainly is a tough one.

She seems miserable. Before the ACTH she was a mellow, easy going girl, who had "recovered" from a serious barfing affliction, and really liked to be held (but could handle solo time pretty well, too). And she slept about 7 hours straight at night. But infantile spasms are known to halt development and can be very damaging, so it was important to get them under control as quickly as possible. Now that the seizures are under control (at least the IS, although it could return at any time, and other seizure types are likely on the horizon) we're not sure what to do to make her happy or comfortable. She still screams almost all of her waking moments. And she's not sleeping much, so that's alot of screaming. It wears me out pretty quickly. At least when she was on the ACTH we understood why she was screaming.

Now we're not sure if the ACTH is just wearing off slowly, if she's having teething pain, if she's irritable because of her rising blood pressure (again), or if this is her "true" personality, just revealed now that her brain is mis-firing a little less. Apparently it's common for kids with neurological problems to be fussy & screamy, especially the high-pitched wail that really emerged during the treatment (when the only thing developing were her vocal chords).

So, we have to decide. Does she need anti-anxiety medicine to calm her waking hours and make her sleep more? Will it make her happy and feel better? Or will it just make us happy and feel better? Do we just hold her and love her and let her be who she is, even if that's "the crabmaster Rowe?" Or do we give her the medicine to make her feel better & be happy, even if it is a medicated calm & happy? Then there are the side effects to consider; are they worth the risk? Would our family be better served if we all were able to sleep more? Is it worth just gritting our teeth and seeing what the future will bring? Or will we miss the boat, and make things worse for the future by not medicating her? It's just so complicated, and unfortunately, I don't think there are really any "right" answers. If so, the docs would just tell us what to do. Even they are wishy-washy. So, perhaps med school wouldn't have helped us now anyway.

Today we meet with the neurologist to review her EEG from Tuesday, and determine our new path. Anti-anxiety meds, anti-seizure meds, other meds to make her life better, to help her develop. I'll be all studied up on the options: The Ketogenic Diet, Zonegran, Topamax, Keppra, Depakote, Lamictal, even Transene for the anxiety. Many parents in our position have made many different and sometimes controversial decisions. In the end we'll just have to choose what we think is right for her and for us, and what we can live with tomorrow, next month, or in 10 years. But even that is almost impossible because our moods & feelings & emotions change all the time -- that is the roller coaster of life. So, we'll just do our best and know that whatever we do it is the right thing for all of us, based on what we know now.

On a slightly happier note, we are starting to realize some small improvements. She is calmed by touch (which is very important to note, and most of us take for granted), and she's starting to smile occassionally. These things suggest that she is effected by the world around her (some neurologically ill people are not). Today she calmed down when she was taken outside, and gave a huge smile just as the sunlight drenched her face. Both Devon and Nana Noma have noticed smiles during bath time recently (but I have yet to catch a glimpse of them), so perhaps she is reacting to the world around her, which is a good sign (baby steps, but we'll take them).

I was ready with the camera for bath smiles tonight, but of course she didn't want to perform.