Archives for posts with tag: seizure

IMG-9604This is Grace’s communication book from school. She’s had a lot of “not great” days this year. I’m glad the school tells us, but it’s hard to see. First, it makes me sad. I want her to do well. I want her to pay attention, learn, be part of the action. I want her to succeed. I want her to not cause her teachers more stress than she should.

Then I wonder what I can do about it.   She could get a “not great” related to seizures, tiredness, or unwillingness to participate.

Seizure control continues to evade us. (I don’t expect total seizure control – I expect minimal disruption from seizures). She went through a period where she was having some really hard seizures. That period seems to have passed.   But we still have some med changes to get through.   I’ve been putting off the med changes because I just don’t feel like she’s ready.  At times I feel guilty about that.  I don’t want to have her on more meds than she needs, but every time we change her meds it messes up her equilibrium. Sometimes it’s easier to stay with what you know than to take a risk that things will be worse. That’s especially true when things feel hectic.

If seizures aren’t bad enough seizures make you tired. But she’s also tired on days when she isn’t having a lot of seizures. This weekend I woke her up at 9 am. I’m 100% certain she would have kept sleeping but she had to play baseball. Is she just tired because she’s 11? Is she tired because her brain activity isn’t allowing her to rest well? Is she tired from meds? Is she tired from stress? Is she just bored? Is it something else? I don’t know.

And then there’s the whole thing about her being unwilling to participate. So then I wonder if what she’s doing is not interesting to her? Is she bored? How do we spark her energy? How much imagination does she have? There are times I delight in her attitude – it means she has spunk! “Not great” days don’t really bring out that delight.

I can’t incentivize her. I can’t punish her. I can pep talk her all I want but all she does then is look me in the eye or lean her cheek toward me to rest her head on mine.

So I’m stuck. The “not greats” tell me something but the rest of the picture is incredibly vague.

In the midst of not knowing I have to stick to what I do know. Something will become clear, but in Grace’s time, not mine. I can’t be scared to push – she needs that. I know her team is working hard. I continue to thank them and try to signal I hear what they are telling me. I update them on all things Grace I can think of.  And finally, I just have to believe that this will pass. The good and great can come again.

Joy

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IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.

Joy

S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy

 

 

 

Around Christmas time Kevin and I decided that we were going to take Grace and Graham to Disney World. It was pricey, it was intimidating, we were experiencing much unrest about the world, but it was time for us to do something fun. We quietly planned, telling only a few people initially. In some ways, it felt irresponsible. We should have been saving those vacation hours because you never know with Grace. We should have been saving the money because you never know with politics. But truth be told we always feel like we play it safe. Our family deserved a chance to try something different.

Graham was ecstatic. Grace quietly listened to our planning knowing long before her brother that this was in the works. Oh my goodness, we planned. Kevin searched websites and mastered the Disney app. I bought a book and searched Pinterest. We borrowed suitcases from my parents.   Kevin reached out to Kamp-Rite the folks who make the tent Grace sleeps in when we travel with questions about a new compact version they have that folds up smaller. Someone there took a minute to click on the link to our blog in Kevin’s email signature. Low and behold they sent us a traveling tent as a gift. Their messages conveyed delight for our family. Their only request was that we send them a pic of us at Disney World when we returned. We were humbled and grateful and in the end sent them several pictures of our trip.

I could barely sleep the night before our trip. I was so anxious. Could we do this? Would it be fun? Could we meet both Grace and Graham’s needs?  We’d be hours away from the team that holds Grace together.

We flew out of Des Moines on a Thursday afternoon and arrived on a bus at our Disney Resort a little after 8 pm that night. We found our room, got food, and watched fireworks before we went to bed that night.

We couldn’t get going as fast as we’d wanted to our first full day there. We finally made it to the park but we were not aware of the multiple steps of security and of course got in line behind a family that just couldn’t make their tickets on their phone work. We made it to our scheduled first stop – a meet the princess with Elena and Cinderella barely on time. As we made it into the room with the two princesses we found ourselves next in line and Grace having a seizure. Kevin was so calm about it asking the family behind us to go ahead. The Disney workers were a bit taken aback by this but quickly recovered when I explained that we just wanted a little more time for Grace to get through her seizure. At some point, the doors were closed and our family – just the four of us- were in a room all by ourselves with the princesses, photographers, and their helpers. In no way did I feel rushed.  We were invited to learn magic and sing along with the music in Avalor and offered carriage rides with Cinderella and the Prince. Cinderella talked to Graham prince lessons but he wasn’t so sure about that.   There were pictures taken with each princess and pictures of all of us together.   As we exited through the Cinderella/Elena gift shop my eyes filled with tears and I wasn’t so sure that I wasn’t just going to sit down and cry. Those minutes, that interaction, somehow they had made all the worry, all the planning, worth it.   We could have gone home then and I would have raved about the experience. But I’m glad we didn’t.

Over the next four days, we did our best to take advantage of all the things we thought our kids would like. Beauty and the Beast, Finding Nemo, the Little Mermaid, Frozen, Jake the Pirate, Snow White, Sofia the First, Winnie the Pooh, Peter Pan, race cars, a safari, and the Swiss Family Robinson tree house. We visited Epcot, the Magic Kingdom, Animal Kingdom, and Hollywood Studios. Graham showed his first interest in Star Wars watching Chewbacca, Storm Troopers, and Darth Vader on stage. We had character dinners and met several of the princesses.   We watched Graham dance with Pluto. We watched Grace light up from pixie dust as we approached Tinkerbell and saw her longingly look towards Rapunzel’s hair. We all rode the Dumbo ride and It’s a Small World. We swam in the pool at the resort.  There was a single duck who frequently joined us in the pool. We rode buses, the monorail, and boats. We saw fireworks sitting on a boat out in the water.

Graham declared on a daily basis “wouldn’t in be fun if we lived at Disney?” He commonly expressed that things were awesome or amazing. Grace’s communication device didn’t work too well in the bright Florida sun, but we caught her smiling more than she normally does and had to watch her hands carefully as she encountered characters in beautiful dresses.

As with all great vacations, there have to be things that don’t go quite the way you expect. We had several mishaps where the monorail stopped working temporarily. We started joking that there is regular time, Grace time, and Disney time. We were amazed by how long we could be eating a meal waiting for the various characters to stop by. Bedtime was pretty late a few nights.

I worried about the disability/accessibility aspect of our trip. I shouldn’t have worried Disney was very accommodating. Apart from having to wait one time for the next boat, they were always ready for a wheelchair. We met other families like ours and had a few minutes to talk about wheelchairs and meds as we waited for the monorail to get fixed. There were “normal” families who went out of their way to approach Grace, help flag down a bus driver, or hold Graham’s Winnie the Pooh when it became apparent that our hands were full.   The one thing I did struggle with was the looks we sometimes got from families as we were loaded onto boats, buses, and monorails first. Yes, we were first, but we were always last getting off. I wondered to myself if they noticed that.

We’ve been home a few days now. We are back in the regular world. I miss the weather in Florida. I miss the attention to detail. I miss feeling like my primary responsibility is to just hang out with my family and experience magic.

But the thing is now I know the magic exists. I know that our family can thrive in a situation that is just about fun. The Disney magic gave us some confidence and some beautiful memories. Kevin has already begun planning our next vacation.

Joy

img_3898This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed.  Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure.  We gave her some diazepam (valium) to stop the seizure and called 911.  Her seizure stopped and when the paramedics arrive her oxygen level was low so they started on oxygen.  Grace was still pretty out of it and her temp was up, by the time we reached the hospital it reached 104.5.

In the ER they started checking for infection running blood and urine cultures.  She was started on an antibiotic proactively and the blood culture came back positive for MRSA.  MRSA is a staph infection that is difficult to treat, while it can be a skin infection Grace shows no signs.  MRSA is easily spread in hospitals, nursing homes, etc and considering how much time she has been inpatient these past two months she could have easily acquired it.  MRSA can live on your skin and you will be just fine but when it colonizes the infection occurs; in Grace’s case it could have come in through her central line port when the needle was inserted, but there is no way to verify.

There is a chance that Grace’s port may have to be removed if they infection does not resolve with the antibiotics.  Daily blood cultures are taken and if results are negative two days in a row she could go home and continue with two weeks on IV antibiotics.

We have been having extensive conversations with infectious disease, interventional radiology (who put in Grace’s port) and nursing supervisors as there has not been a clearly documented, communicated, or followed port protocol for Grace.  We have found that health organizations have different port protocols and there can be differences within one organization.  We continued to push for clarification so we know when to ask or question if we feel that the protocol is not being followed.  All parties are now in agreeance that Grace should follow the same hematology/oncology protocols used with other children at Blank and we should defer to hematology/oncology or the Blank Infusion Center for her port cares at any time we desire.  Grace again falls in her own category and without standards to base her treatment on we have to push the envelope to establish our own protocols.

Between the home and work needs, port issues, learning about MRSA and conversations around the potential removal of her port that was put in just two months ago we have been a bit overwhelmed.

Grace has been showing signs of more energy and is sitting up and playing on her own.  Based on past sicknesses this is a really good sign.  Now we just wait for the culture results.

Grimes/Johnston EMT staff were excellent and took great care of Grace and we got to meet one of our neighbors who is an EMT.

Kevin

UPDATE 9/29 11:10 – Blood cultures drawn on yesterday are negative!  It will continue to be cultured as will the draws from this morning; if they come back negative tomorrow Grace will likely be discharged Friday.