It used to be, when V got sick I would take to the Twitter and Facebook to get advice, support, and sometimes a much needed dose of reality.
But lately I find myself turning inward more and broadcasting less.
Everything is put aside so I can focus on Vista and what she needs to get better.
This past week has been a perfect example of that.
V’s been sick again. Starting with a bad case of croup, and then spiraling down into an asthma flares and other complications.
We’ve been logging the hours at the ER and Children’s hospital (where they wanted to admit her, but there weren’t any beds available. -1 for free healthcare).
And through all that, I’ve been much quieter than normal. Except for a few of my closest friends (who I had to cancel plans with) and a couple clients (who I had to explain why I wasn’t getting any work done), no one has really known the extent of V’s condition, this go round.
I couldn’t really say why. There was no concious thought to not let everyone know how she’s doing.
It was more just the need to spend the time taking care of her, mixed with a healthy dose of exhaustion.
Thankfully she seems to have turned a corner and maybe now that I know that she’s on the upswing I feel better about putting out updates.
We still don’t fully know what’s going on with her. But we’re working on trial-and-error meds to see if anything will help and if not we’ll get a referral to a pulmonary specialist.
Mommy instinct (which never fails me) tells me that there’s something more going on and we’ll need that referral. But we’ll play the game, and try the meds, and then I’ll gear myself up for another battle for my daughter’s health.
So yeah… about those floors. I wrote last month about pulling up our carpet and putting down laminate. And then all hell broke loose.
But the floors are done! (YAY).
Here was our living room before.
Beautiful beige carpet.
But then we did this.
For the record, I hate ripping up carpet almost as much as I hate painting. Carpet staples are the debbil.
Vista didn’t react well to all the dust stirred up and so went to stay with my parents for a few days while the actual flooring installation was being done. And it’s a good thing, because despite the effort to poly everything and keep things as clean as possible, laying down new floors creates a dust storm in your house (ie. don’t install new floors if you have any OCD cleaning issues).
This was our first glimpse of the new floors. Notice the lovely layer of dust on top. But I was still thrilled with how they came out. Even though it’s laminate, it has a hardwood look. And I’m so glad we went with the wider planks.
So after they were done the floors we washed and scrubbed and vacuumed the best we could before bringing Vista back home.
We managed her asthma and the effect the dust was having on it OK until the guys came over that next Monday to finish the stairs. The little bit of dust it created was just enough to send V over the edge and necessitate a nice little ambulance ride to the hospital.
We knew we couldn’t bring her back to the house after that until all the dust had died down and we had thoroughly cleaned everything. My parents were gracious enough to let Vista and I stay at their place for the week. Let me tell you, being back in my childhood room and sleeping in there with my daughter was weird.
We were contemplating going home Thursday morning when Vista informed us her ear was bugging her. V’s not ever the type of kid to complain that something hurts, so when she does we tend to take it pretty seriously. She complained just enough to get me to take her into the clinic and after that she never said a word about her ear hurting at all. But the doc at the clinic confirmed a bad ear infection. But then he listed to her chest and gave me one of those ‘doctor’ looks. Apparently she had one heck of a wheeze still going on.
So we ended up a my parents a few extra days while Bil did some extra cleaning and V got a few more days of antibiotics and steroids on board.
Since we’ve been home, she seems to be OK. But the floors are a bit of an adjustment.
Vista’s done a few slip and slides while trying to lean on the couch.
Our border collie is fine with the laminate (although he was very happy to have V home again).
My shepherd, however, hates the new floors, preferring now to reside in the front entryway or V’s play tent when she brings it out.
(I think the pink brings out his eyes).
So, yeah. It’s been an adventure. Nothing could ever be simple, not even putting in new floors.
But I am so glad we had them done (and SO glad we didn’t attempt to do them ourselves).
I’m thrilled with how they look. Now, I just have to get those walls painted… and redo the tile on the fireplace… and paint the kitchen…and… win the lottery evidently.
Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead
Sooooo… yeah. Way back in November I wrote about how Vista hadn’t been doing well. I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October. Of course, being just a mom, I was pooh-poohed, and told it was just viral. I wasn’t convinced.
I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.
I finally took her into our family doc, who is awesome. We decided to rule out EVERYTHING it could be, until the only option was the meds. He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it. These all came back normal. All of them.
It was time to call her neurology team and tell them she was still not well. Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.
They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose. She didn’t think it would make a difference, but it would be something else to try until we went in to see them.
So, rather than the full dose in the evening, she now gets half in the morning and half at night. And guess what? Rash? Gone. Bowel movements? Returned. Weight loss? Stopped. *poof* All her symptoms magically disappeared.
We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out. For now, we’ll leave things like this as they seem to be working.
Our project now is to get her to put some of her weight back on. At 38lbs and almost 3’6″, she’s too slim for her big frame.
The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy). This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions. We got the results right before Christmas, and the results were… interesting.
She has problems with impulse control (so telling her not to do something can actually make her do it. Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that). These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.
So, what does this mean? Essentially, that V could be a danger to herself. She can’t stop herself from touching a hot stove if her brain decides to do it. It means, as we already knew, she requires constant supervision. It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.
The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that. That will take some of the stress off us, I think.
They also recommended further testing. When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions. The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures. Yay. There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.
For now we’re in a holding pattern. As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are. And keep our fingers crossed.
I can remember sitting in high school biology and being fascinated by genetics. All the weird traits that are inherited from one of your parents.
Did you know being able to roll your tongue is a genetic trait? So is having dimples.
That second toe that you have that’s longer than your big toe? You can blame that on your parents too.
Part of the interest, for me, came from being adopted. These little dominant and recessive genes gave me a peak at two people who were, at that time, unknown to me.
Now that I’m a parent myself, genetic has taken on a whole new level of interest.
It’s fun to sit there and stare at Vista and catalog all the things that are ‘mine’ and all the things that are from her dad.
Blonde hair – definitely from Bil.
Blue eyes – well both of us have blue eyes, so it’s hard to say who her eyes look more like.
Her chin is definitely mine. And so are her ears.
Since she’s been born, though, we’ve also been exploring genetics on a different level. Scientists sit in a lab somewhere, combing through her DNA strand by strand, trying to find that one little piece of code that’s not just right. If they ever find it, then it’s becomes Bil and my turn to have our DNA examined to see if the uniqueness that is Vista comes from one of us in particular.
As she gets older, though, we discover more and more, on our own, that has been passed on to her.
If you follow me on Twitter or Facebook, you know that V’s not been totally well lately and no one’s been able to figure out why. She’s had a rash on and off, she stopped eating, has lost a lot of weight, and had one ER visit for fluids because she’d become so dehydrated. The big discussion has been – are her new anti-seizure meds to blame.
The answer? Maybe. Depends on who you talk to. The ER doc says probably, the neuro says no, family doc say perhaps, and the allergist we saw today says probably not, but it is a possibility. Unless we take her off of them there’s no way to know for sure. They’re working right now, though, so there’s no way we want to do that. Taking her off means looking at brain surgery and we’re just not ready to face that yet.
More than likely she has some sort of virus that her body is fighting that’s caused her to lose her appetite.
And the rash? Well she can thank genetics for that.
We found out today that Vista has chronic urticaria. That’s a fancy way of saying that she’s super susceptible to hives. Anything could make her react. Being too hot, too cold, eating something that her body reacts too (not to be confused with an actual food allergy). Or, like in this case, simply coming down with a cold, flu, or other virus, can cause her to have hives on and off for weeks or even months as her overwhelmed system tries to fight it off.
She can thank both Bil and I for this. We both were like this as kids too. I still quite often get hives on my arms from eating strawberries (not that a little thing like hives will keep me away from a bowl of strawberry shortcake). And anyone who has ever had a drink with me has seen the ‘allergic flush’ that turns my skin red as soon as I have liquor (doesn’t keep me from drinking either. heh)
The good news is that it’s more a pain in the ass than anything else. And? It gives her another thing to blame us for, years from now, in therapy.
Rather than ask for donations to her therapy fund, I’d rather know – what’s your favorite trait that you’ve passed on to your kids? Or better yet… which one are you going to get blamed for years from now?
Every Wednesday morning, Vista and I jump into the truck and head down to the Parent Link centre in town for our weekly therapy group.
It’s an opportunity for her to connect with other kids and work on her social, motor, and sensory skills and it’s a chance for me to connect with other parents of special needs kids.
In the past month, we’ve added a bunch of new families to our group, as many of the kids from the spring group have moved on to preschool or kindergarten.
Many of these new parents are where we were two years ago. No diagnosis. No support. Only the rock solid knowledge that there is something just not quite right with your child.
It’s a difficult place to be. I know. I remember.
With all the progress she’s made in the past few months, it’s easy to sit back and enjoy a sense of semi-normalcy.
Until, of course, reality butts in.
We finished up V’s bottle of meds last night, so this morning I opened up the new bottle we had just picked up from the pharmacy.
I drew a syringe full and looked at it. Hmmm…. that’s not right. Vista’s meds are dark red. This stuff is almost clear with a slight tinge of pink. Was there water in the syringe that I hadn’t noticed?
I squirted the meds down the drain, grabbed a new syringe, checked that it was clean and dry, and tried again.
I paced the kitchen waiting for the pharmacy to open.
Watching the clock. Mentally calculating in my head how far I could push the delay in her meds and still leave enough time for 12hrs between her doses.
I finally got the pharmacist on the line. And found out they had switched the brand of her meds. They couldn’t get her normal ones, a problem at the source, no longer able to order the old brand, so they switched it to a new brand.
And. Didn’t. Tell. Us.
Shouldn’t be a big deal, right? Only it is.
Each brand is formulated differently.
And that means switching brands in anti-seizure meds can be like yanking them off old meds and suddenly starting new meds. Which? Can cause major seizures.
I’ve spent the morning on the phone with pharmacies, trying to find someone who carries her old brand.
I have a call into our Neurology pharmacist asking what we should do.
I called our Neurology nurse and asked if she thought it might be OK just to go with the new brand (she confirmed that it was definitely NOT OK and that I needed to talk to the neuro pharmacist to see what he recommended).
My nerves and feelings are raw.
I’m back to grieving the child I thought I was going to have three years ago. The one that was healthy. The one that didn’t need three doses of anti-seizure meds every day to keep her alive. The one that didn’t need therapy. The one that didn’t know the inside of the children’s hospital like the back of her hand.
One day, maybe I’ll get to the end of that grieving process. But not today.
Sometimes I look at Vista and there’s this sense of awe and amazement that this little child is mine.
But as each day passes, she’s less ‘mine’ and more her own person.
Sometimes I have to remind myself to step back and remember that the way she reacts to things isn’t necessarily going to be the same way I react to things.
She has her own way of doing things. And is definite about how her world is structured.
As time goes on, we realize more and more, that she’s not fitting into our world but molding us into what she needs her world to be.
And that’s not without it’s challenges sometimes.
One of our biggest frustrations has been around asking her to do simple things. Every day tasks. Using words she knows. And yet there seems to be no comprehension.
We assumed it was her three year old self being, well, a three year old. Defiant. Willful. All the things a child that age can tend towards.
Until we did one of a speech and language assessment with her a few weeks ago.
Her verbal scores came back as expected. She’s progressing wonderfully in her talking and ability to communicate.
Her receptive scores, those that indicate her ability to take in and process what we’re saying, were a surprise.
Despite the fact she knows the words, the meaning doesn’t always translate when you speak with her.
So when we we’re frustrated over her seeming lack of comprehension, it’s because… yeah… she really doesn’t understand.
Complete *headdesk* moment.
A neuropathway issue. Apparently it’s not all together uncommon in kids with her types of brain malformations.
But now we know. And that means we can start focusing on trying to rewire those pathways. Because a childs brain is an amazing, changing, thing.
She may not understand us, but we’re slowly learning to understand her better. And changing the way we do things to help her be who we know she can be.
We’ve started adding back in some signing, to see if visual cues help with the comprehension. But beyond that, we don’t have a lot to go on.
So I’m turning to my brilliant blogging / twitter friends.
Suggestions on what you would do? What you’ve seen work? What you think we could try?
Friends and family who live out of town have been asking for a Vista update. So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie. Oh come on. You know you want to share…
Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on. She did really well on her first med, Clobazam, until a growth spurt rendered it useless. She was on the highest dose do the decision was made to add a second drug, Trileptal.
After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess. They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures. So, getting her seizures under control has become priority #1 in her medical regime.
At that visit we also got V’s latest diagnosis: Symptomatic Partial Epilepsy
Not a huge shock, since she’s been seizuirning for 3yrs. What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.
Unfortunately we haven’t made it two weeks yet.
V hasn’t done really well on the Trileptal. The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.
So, they’ve now added in a third med called Valproic Acid. She’s only been on it a few days, so only time will tell how this one works. We’re keeping our fingers crossed that third time is a charm.
The down side about the Valproic Acid is that she’ll need her levels checked. This means the blood tests. But really, if it controls the seizures, it’s worth a few needle sticks.
On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy. Yay! Pizza and ice cream for everyone! We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.
All and all, she’s doing not too bad. She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.
I can definitely say it is never a dull moment around here.
I can also say I should have never written about how good things were going, because I obviously jinxed them.
First of all, thank you all so much for all your input on the preschool situation. I was surprised by how many of you with special needs kids have decided to homeschool them. We’ve decided, for now, to keep Vista home in the fall. This week has proven that preschool would not be a good option for her right now.
Her seizures a week ago have really changed everything.
We had our second session with Vista’s occupational and physiotherapists today at the Children’s Hospital, since her seizures. She hasn’t had another seizure since we upped her meds, which is great. Unfortunately, todays therapy session showed regression in her balance and motor skills, as well as behaviour issues. Even more than last week. Which is very concerning. Why is she continuing to skill regress with no further seizures?
After half an hour trying to work with her, her therapists stopped the session and asked me to call her neurologist. As a parent, when that happens, it doesn’t give you warm fuzzy feelings.
I put in a call to her neurologists office right away and then waited.
The call back didn’t take long. I’ve discovered when the word ‘regression’ is involved, it never does.
Turns out, it’s not just the therapists who are concerned.
Her neruo is ordering a med change. This means slowly weaning her off her current meds (goodbye sweet valium chocolates…*sniff*. I shall miss you), and slowly adding in a new med. I’m still waiting to hear what that new med is going to be.
And we get to make a trip to the neurologists office. He’s not happy with the way things are going right now and wants to talk to us and evaluate her. So, tomorrow we’ll find out when that appointment will be.
While I’m happy that things are being done and they’re taking this seriously, the whole thing has throwing Bil and I into a bit of a tizzy.
We were comfortable in the knowledge that the clobazam was working for her and had stopped her seizures and regression. Now that it’s not, it’s left us on tenuous ground as far as what the future holds for her. I know we can only take it one day at a time, but when it’s your child who is dealing with all this, that’s a crappy solution.
And since I’m sick of being all ‘woe is us’, why don’t you head over to the BlogHer@Home site.
We’re giving away, hot off the press, Aidan Donnelley Rowley’s brand new novel Life After Yes!!
You’re definitely going to want it on your summer reading list, so you may as well win a copy, right?
The contest is open to everyone (American, Canadian, Martian, BlogHer attendees, those partying with us at BlogHer@Home, those who have never heard of BlogHer). All you have to do is leave a comment on this post. So go…shoo… why are you still here??
It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep. I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in. She barely stirred as I walked with her down the hallway.
And now we wait for the chorus of “Oh man, your three year old naps?!? You are so lucky!!”
But right now, I’m not feeling really lucky.
Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.
She had two seizures over the long weekend. One on Sunday while she was out with her respite worker, Dorothy and her family. Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.
She seems to know when she’s going to have them as she always manages to be sitting down when she has one. On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure. I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it. But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.
So here we are at today. She slept for 14 hours last night after her seizure. Which is how we confirm if it was a significant seizure or not. Minor seizures don’t affect her. But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.
And now she’s sleeping again after only being up for two hours. Which means I probably missed a seizure while she was outside playing. That’s three in three days. And that? Is not a good thing.
So here we are again. Waiting for a call back from her neurologist and probably playing the medication game.
Part of me wants to sob in frustration.
Part of me is worried about the effects these seizures might have on her speech and motor skills again.
Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.
But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.