Archives for posts with tag: sleep

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

Advertisements

GraceChangesEverythingI was up at 2:30 this morning worrying about what Kevin and I will do if insurance coverage for those with pre-existing conditions would again be denied. Or what we would do if it were to cost a zillion dollars to have bad insurance? I kid you not my anxiety around this does not go away. It just sits below the surface.

I thought about Jimmy Kimmel’s monologue about his infant son’s cardiac condition and treatment. I watched it last night holding Grace on my lap. I cried throughout. I feel for him – the grief, the horror, the vulnerability, the gratitude. The standing in a room full of people worried about your child and the utter helplessness of knowing you are the least informed person in the room. I find myself jealous of his ability to thank the nurses and doctors and therapists who were there so publicly. I would love to sing the praises of members of Grace’s team to a national audience. They are just as deserving. I started planning my speech in my head- because that’s what you do at 3am.

I thought about how Grace hasn’t complained about the first bras I’ve ever bought her. I researched so much to find something soft, comfortable, nothing to poke her, etc. etc.   They sent the bras beautifully wrapped, bright yellow ribbon tied on the outside. We opened them together. Grace chewed on the ribbon- not exactly what they had in mind I’m sure.   But I guess we had our mother/daughter moment! I wondered if her not complaining means I found the right ones?

I thought about confirmation Sunday at church just a few days ago and wondered what that will look like for Grace in 4 short years.

I wondered if I’m doing enough anywhere.

I thought about how on Saturday it had dawned on me that if Grace was a typical 11-year old I could have left her alone for a few minutes to run to the grocery store. I honestly don’t know if I’d ever thought about it before.

I wondered if we’d be able to keep Grace healthy so she can have surgery in 2 weeks. (Kevin was coughing beside me at that point). I wondered if this would be the last surgery she’d need for her mitrofanoff. I worried that my insurance through the state is only guaranteed to cover her through December, then who knows what will happen.

I went over the points of the dance recital meeting I went to last night for Graham in my head. I thought that maybe having a boy dancer is easier? I thought about how much I enjoy that he dances. I thought about how much I hate that we won’t be around for the class dance pictures.

I worried about work. I thought about grabbing my computer and sending emails right then and there. But, I didn’t want people to know I was up in the middle of the night worrying so I kept trying to go back to sleep.

I thought about how epilepsy touches everything that we do.

I thought about how we could plant a few vegetables in the back yard this summer and how that would be good for Graham.

I laughed at myself because I’ve been wishing for some time and space just to process things. Life. Grace. Graham. Work. Home. The pressure has been relentless. It shows no sign of letting up.   The 2:30 am wake up…perhaps that was the time and space I’d been hoping for.   But I’d come to no conclusions, and I didn’t really feel better, so maybe that wasn’t it.

What actually made me feel better was a sign in our kitchen I glanced early this morning. We’d picked it up at Hobby Lobby about a month or so ago. It states “Grace changes everything”. Our Grace wasn’t the original intent of the maker, and I’ll never find a “Graham changes everything” sign although it’s also true. The thing that made me smile was the unspoken words that Kevin and I exchanged when we saw the sign. We were getting it- no question. Frankly, I think it could have been horrid looking but that simple statement reflects our reality, reminds us that we are not in charge, and is just a truth we have to embrace. Fighting against it does us no good. We are left to do what we can, where we are, with love, fierceness, perseverance, and hope.

Joy

IMG_9509We aren’t out of the woods yet – but we can see daylight.

Our visit to see the surgeon in Minnesota this past Thursday didn’t exactly go as we’d planned. The surgeon ended up being stuck in an operating room and not able to see us. Grace had a few x-rays and a test of her bladder while we were there. Two other doctors and a team of nurses all ended up weighing in on Grace’s care.

The good news is we can use the mitrofanoff. We are able to stick a catheter through a small hole in her belly button, have it travel through Grace’s appendix, into her bladder and pee comes out. It is wondrous. It will most definitely change our lives (Kevin’s, mine, Graham’s and Grace’s) and make it easier to care for her.

The not being out of the woods is a combination of a lot of air still in Grace’s abdomen, a slight urine reflux to her kidneys when her bladder is full, and a small pea sized polyp that has developed on her belly button. The surgeon called on Friday, apologized for missing us, and we hatched a plan for each of those things still lingering. We are adding a medication for five days to see if we can get rid of some of the excess air to make Grace more comfortable; this will give her bladder more time getting used to having to work again and then we will retest. Her kidneys are not at a significant risk – we can afford to wait. We will watch the polyp as there is a chance it will go away on its own. When we’d left on Thursday they said we’d see the surgeon in November. When she called me on Friday she said she’d arrange for us to see her in September.

We continue to watch for any distention, monitor Grace and note times she is uncomfortable, monitor her energy level, and watch for fevers. We are not out of the woods.

The surprise of the trip, which perhaps threw us more, was the instruction for us to cath Grace using the mitrofanoff for the next three weeks, every three hours…around the clock. They explained that in some ways its like a pierced ear and the body would try to close the hole; we have to remind it to stay open. We were sleep deprived from the past three weeks – what’s three weeks more right? We took it in stride I think when the nurse was in the room who gave us the news.   After she left we both just looked at each other and remarked that perhaps someone should have told us this part a long time ago. We thought we’d rest easier after having visited the surgeon, and it just wasn’t going to be the case. We have settled on cathing her at 11 pm, 2 am, and 5 am. Three days down, 18 more to go. Had we known in advance it wouldn’t have changed our mind on whether or not to do the surgery but we would have been prepared mentally that this would be a necessary step.

Grace overall has had good energy and continues to improve in her steadiness.

The ultimate test of her stamina will come on Monday when she starts 4th grade.   The first few weeks of school tend to really wear her out when she hasn’t had a small bowel blockage and major abdominal surgery the last month of summer vacation. We will be communicating a lot with her school team to be sure that we are all pushing her just the right amount. They too understand that we are not out of the woods yet. It will be strange to not be right with her as we have been most of the last month but we will let her go because we can see some daylight.

Joy

IMG_9306I was discouraged this morning as I drove through the rain to get to the hospital.  It was gray and gloomy and that’s how I felt.  This is overwhelming.   I asked myself how we are really supposed to do all of this –  work , be with Grace,  represent Grace, be with Graham, help each other with all the emotions that come with what we are going through, and do it all on little sleep.

Last night I was home with Graham.  We drove through a rainstorm on the way home.  We saw a beautiful rainbow as we approached home.  “Mom, it’s my first rainbow,” he told me.  I replied “yay” .  He said, “tell me congratulations.”  I did.

I loved that moment.   Kevin and I laughed about it later.  It was somehow just what I needed.

This morning there was no rainbow for me to see before I got to the hospital.

Today we got to give her a bed bath.  You can see her ribs.  Everyone is excited about this.  Her tummy is normal – no sign of the roundedness that brought us in here.

Tomorrow we will stop the tube that’s pulling food out of her stomach and if she does ok without it for 8 hours it will come out.

On Saturday we will give her Pedialyte.  While she hasn’t met the measure for any of this to happen (that they’ve been telling us she needs to meet) the surgeon reminded me of the art and science of medicine.  With Grace, she needs to use a little art.  Again what can’t be explained by science is Grace and that makes me feel a little better.

It’s also just been good to be with Grace today.  To see her furrow her eyebrows at people.  I saw her grab a toothbrush from a nurse so fast that the nurse was surprised by her strength.  A stuffed horse arrived today from a family – that horse has been drooled on, petted, and flung around a few times.   It’s tucked in next to her now.

It’s raining again outside.  She’s snuggled all on her side, even though I tried to position her differently – and for right now that’s enough.

Joy

IMG_2502

Grace has a schedule:

  • 6:15 – Morning meds
  • 6:45 – Out of bed (allow time to wake up before next step)
  • 7:15 – Cath, get dressed, G-tube feeding
  • 10:00 – Water
  • 11:30 – Cath
  • Noon – Meds and G-tube feeding
  • 2:30 – Water
  • 3:30 – Cath
  • 4:00 – G-tube feeding
  • 5:00 – Meds and water
  • 6:30 – G-tube feeding
  • 8:15 – Cath, pajamas, meds, water, snuggle

The rhythm plays every day. Some days we fight it and bemoan it. It feels constraining, limiting. We can’t do what we want because we have to keep it going. We stretch it in places to allow the flexibility we need to get something done, but sometimes there are consequences to that. One time, one horrible time, we’d flexed it so much that we actually forgot to feed Grace. Our girl, normally so easy-going was mad. M-A-D. When we realized we hadn’t fed her we felt absolutely horrible.

On hard days the rhythm is what keeps you going, you know you have to do it and so you just move from one thing to the next, keeping her going and yourself.

The rhythm happens if we are sick, if she is sick, if Graham is sick. If we are grieving, if we are exhausted, if things are changing, if we’re totally over-loaded, or having an easy day it continues.

That’s the daily rhythm. There are others.

Each week she has therapy on Monday mornings and Wednesday afternoons. Each Sunday night I write an email to school about how her weekend was and letting them know what we expect for the week ahead. (When Grace will be out of school, who the nurse will be, if we expect her to be tired, etc.)

She gets an infusion and a shot every 28 days.

Fall and spring mean multiple trips to Minnesota for specialists that we are scheduled to see six months apart. Right now we are able to only have to see those docs twice a year and don’t have to schedule in the middle of winter. It usually means at least two trips to Minnesota and back each season. The docs only practice certain days. All in all to only be heading that way in two seasons is an awesome thing.

I have fed Grace in our bathroom while Graham is in the tub (I took a picture one night because it just seemed so strange yet normal to me in the moment) trying to keep the beat for both of them. I did this knowing ultimately someone would be off by the time it was all over, but trying my hardest to keep things on track.

I was away from the rhythm for a few days recently. Coming back to it feels demanding, un-relenting even. I thought more about how we are just keeping her going in completing these activities. There’s no fun with her in there – except for the snuggle at bedtime. Now that I’ve been home a few days it feels less that way. It is what it is. It keeps her going so we can snuggle, and read, and swing, etc.

We’ve been told that we make it all look easy. I’m never sure how to take that. Is it a compliment? Or is it a criticism that we aren’t as transparent about what it takes as we could be?

I guess it doesn’t matter. It is what it is. It’s how we work. Part of the rhythm of our family.

Joy