Archives for posts with tag: pee
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Amazing views of downtown Minneapolis.

Grace has been sleeping a lot. It turns out that her insides don’t like being moved around too much. We have had issues with both pooping and peeing. I never knew until I became a parent how important pooping and peeing really are. I feel like I could write a book about it sometimes!

Grace has been incredibly tough, hardly a complaint. She doesn’t want to play with toys though. They have offered her some really cool ones, and we’d brought one of her favorites from home. She will watch me play with them – but won’t actually do much to play with them on her own. That is a sure sign that she is not feeling very good.

The doctor is completely willing to let Kevin and I run the show. Evidently a lot of the orders end with “per parent’s direction.” She’s on some extra meds – antibiotics, pain meds, etc. Some of it will go away when we go home, some of which we will keep on board for awhile. We are a little anxious about her comfort on the four-hour drive home since she is tiring so easily.

We had some trouble with seizures early on which isn’t unusual due to the stress she’s been under, but still hard to watch. I called the epileptologist and we’ve made a slight adjustment in meds – just temporary- to try and get her some relief. The seizures pull on the incisions and that has to hurt. The extra med – plus I’m sure rest has helped the seizures calm down.

We have had Graham with us these two days. I was worried about how he would do, but he’s done pretty well. He checked out the sibling play area for a while and was able to hang out with some other kids. My friend Megan and her daughter came for a visit, Graham and she made tents out of the curtains in Grace’s room and sat together in a big rocker watching Disney Jr. and playing apps on phones. He’s enjoyed the pool at the hotel. Kevin has taken him out and about to see a few things around the city.

He takes very seriously the necessary hand washing and hand sanitizer necessary when someone is in the hospital. He has gently approached Grace and gets up on a chair to pat her leg and check on her. The doctor’s and nurses have been great with him. He is always recognized as a member of the team – but also they have asked him questions about what he likes. The walkway into the main part of the hospital is decorated with stars and you can use your hands to have them make music. He loves this – and all the other touches that let you know you are in a children’s hospital. With him, I’ve had the chance to get outside a little. We have sat together in the family area and read books.

He loves Minnesota. I’m not exactly sure how he defines it in his head – but he’s told me a few times in these last few days that he wishes we could be in Minnesota more.

He’s headed to my mom and dad’s today so he can just be a kid and we can give Grace our full attention as we prepare to bring her home. They think maybe we’ll be discharged Tuesday.   We are just going to take it one day at a time.

Thank you for checking in on us.

Joy

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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

14-Harris

I was listening to my ipod today in shuffle mode. Ben Folds’ “Gracie” came on.

It’s a song about his daughter..her growing up.

It was the end that really got me – he sings

“there will always be a part of me, nobody else is ever going to see but you and me, my little girl, my Gracie girl”

I got to wondering what part it is of me that my Gracie sees when the two of us are alone.

Sometimes it’s my frustration that I’ve been peed on- again.

Sometimes it’s kisses on her cheek.

Sometimes it’s tears.

Sometimes it’s singing in her ear.

Sometimes it’s a prayer.

Sometimes it’s me telling her it’s going to be ok.

Sometimes it’s me saying “ I got you, I got you, I got you” as we wait for a seizure to pass.

Sometimes it’s me begging her to cooperate.

Sometimes it’s me telling her how much I love her.

Sometimes it’s just quiet- a snuggle- the longness of her body somehow still fitting into the shortness of mine.

Sometimes it’s me telling her “I’m almost done- I promise” as I comb her hair or brush her teeth.

Sometimes it’s me asleep beside her.

My Gracie has seen me:

Desperate and sad.

Brave and confident.

Madder than I ever knew I could get.

Exhausted.

Impatient.

Thankful.

Vulnerable.

Laugh with pride.

Experience wonder.

Experience grief.

Embrace quiet.

Experience love.

Experience doubt.

Try, and try, and try again.

I value very much that part of me that Gracie sees that no one else does. My thanks to Ben Folds for pointing it out.

Joy