Book Updates

The first three volumes of my Book of Mormon commentary were released in paperback this morning!  CLICK HERE to see!  And please share the link with your LDS friends!

 

More of the children’s books dropped on Amazon this morning, too, if you want to rate any of them for us!   CLICK HERE for the Kyrie’s ABC bookCLICK HERE for the G-tube bookCLICK HERE for Kirk’s book about cerebral palsyCLICK HERE for Mary’s book about deafness and cochlear implantsCLICK HERE for Barrett’s book about siblings with special needs.

But you can still buy them cheaper if you get them directly through us!  CLICK HERE for the discounts and the full set!

 

 

That is all the pre-dawn excitement I have to offer.

The kids are going to be so excited when they wake up!

I can’t wait to show them!

Crayon Walls and Dryer Bubbles

The day began with this:


I didn’t get out of my room fast enough this morning, and my amazing children started their homework while I got ready for the day… which meant Kyrie had access to the crayons, which she used on the wall(s).

I got the magic eraser and gave it to her to scrub off the crayon.

She informed me she was too sick to clean it up.

I informed her she wasn’t too sick if she was well enough to color on the wall in the first place

She told me she might die.

I told her to go out with honor.


She did a good job, so I made her queen of wall scrubbing.  She thought this was pretty funny.  We declared it to be Funny Day, and had a blast!


It was one of those days where everything went miraculously smoothly.  Homework got finished, progress in math and reading unfolded, chores got done, and we still (obviously) spent a lot of time playing.

I even took a nap, I think.

We bragged on the children, and how well they had done.  We wanted to point out how our “good day” happened from being kind to each other and following directions.  Every morning the children pray “help us to have a good day” and we have been encouraging them to pray more specifically about what a good day looks like and what kind of help they need to make that happen.  This morning Kirk prayed for help “that we can be kind to others and follow directions” – and today they did!  So we wanted to point out, to help them feel and experience how that specific prayer really did unfold and was answered and did impact us as a family.

They were very proud of themselves, really and we made a fun dinner with carmel corn as a treat for dessert to celebrate.

And then someone (reluctantly) confessed to dropping a bottle of bubbles down the lint trap of the dryer.


And so our day ended much the way it began.

Because that’s parenting, the experience of caring for others through the mess of mortality.

“Fathers and mothers, your foremost responsibility is your family. By working together you can have the kind of home the Lord expects you to have. By showing love and consideration for one another and for your children, you can build a reservoir of spiritual strength that will never run dry.” 

~ Spencer W. Kimball

Mortality was, at least, cooler today.

And my new cochlear implant processor batteries went out tonight as I was typing this, so that’s how long they lasted.  I can’t remember anymore when I got them, so that’s no help in figuring out how long they lasted.  It was somewhere between three and four days, I think.  

So that’s two batteries per ear, so four batteries twice a week, so eight batteries a week.  I think I might have enough to last until Christmas.  Maybe my flex card starts over in January.

If not, maybe I will just have the children draw some batteries on the walls or fish some out of the lint trap of the dryer.

Mr. Bingley

I woke up around four this morning, and got up to do my scripture study and prayers while I could.  I had barely laid back down as the sun was coming up, when a little bark knocked at my door.

Kyrie woke up as Mr. Bingley today:

The real Mr. Bingley, named after the Jane Austen character, is back at our host family home in Ohio.

We spent the morning playing “broccoli tea party picnic”:

Today was also fun because we visited another ward for a friend’s son’s ordination to the aaronic priesthood.  That was my first time to be invited to that or witness such a special blessing.  We were so honored to be there, and it was good for us as we prepare our boys in just a few years.

Kirk and Mary played scripture chase on the way:

Even better, though, it was at the Brookhollow ward where I was baptized!  

It was such a homecoming for the anniversary of my baptism eight years ago!

What a crazy thing, to be back there in that building but now with my own family when that had once seemed so impossible.

And if all that were not exciting enough, it was their primary program day!  Our children missed theirs because of us being in Cincinnati, so at the last minute our children ran up on stage also and joined in that ward’s program!  It was marvelous!  I was so thrilled they got to enjoy that experience, and even Kyrie went up with the toddler class!  It was so funny!

We did make her little syringes to be blessed with the bread and water at sacrament, and that worked really well!

She was so excited to take sacrament again!

Barrett was excited to play in the hallways instead of stay in class!  We talked about it HERE.  That boy cracks me up.

It was raining when we got home around four, and even Alex was calmed by it.  Suddenly it is now nearly ten o’clock and the evening is gone already.  I was grateful dinner was already in the crockpot when we got home, but the rain helped cool down our house as well.  We will be able to do some cleaning and organizing tomorrow after last week’s not even being able to move from the heat.

Kyrie survived more surgeries, woke from her coma, narrowly avoided a chest tube with her collapsed lung, and seems to be nearly recovered from Pneumonia.  She’s a little miracle, that one, so we will see how she progresses this week.  But I couldn’t believe she was just standing on stage with the other toddlers this afternoon!

So much gratitude this Sabbath, and it seems to bring peace and calming in a way I needed, which makes me even more grateful.

Don’t be anxious about anything; rather, bring up all of your requests to God in your prayers and petitions, along with giving thanks. 

Then the peace of God that exceeds all understanding will keep your hearts and minds safe in Christ Jesus.

~ Philippians 4:6-7

Oh, and so far my new ear batteries have lasted that first afternoon, and two whole days.  That’s more than I thought they would!  But my new processors do fall off my head constantly, so it’s super annoying.  I will need to get stronger magnets for them to stay on consistently.  The features do make it worth it, though, so I am going to keep trying them.

Blessings

If all things are temporal and spiritual, like Nephi said, then blessings have layers, too.

Like when your “parents” are in town and invite you and your husband over for dinner, and your husband’s parents stay with the children.

Then you get respite, date night, amazing food, and spiritual edification all at once.

Do you see all those fans?  And the mess around the house?  It’s because it is about 96 degrees in our home!  Way too hot to move, much less clean up.

We came home from Cincinnati to no air conditioning!

It has been a very hot week, and all of us are extra exhausted and worn out and a bit stressed from it all – but we named it, and have been trying hard to be extra patient with each other and go on extra field trips when we could just to stay cool.

Sometimes, it was even cooler just to play outside in the breeze than it was to be in our house!

Regardless, our family has learned a new lesson that we are mostly very nice people when we are very comfortable, and so it was our turn (again) and being made very uncomfortable just to be sure we are very nice people deep down where it matters.

We are still working on it!

But then, when a family from church had a window unit we could borrow, Kyrie naturally got dibs on that… which somehow naturally turned into a giant slumber party in the girls’ room!

That was movie night with the grandparents tonight.

But know what else happened?

The grandparents brought the window unit we got the summer I had cancer the first time!  I didn’t know we still had it!  But he knew where it was, and brought it to us, and now we have a window unit in our room, too!

It is such a relief after a very hot week!

Relief from the heat is a temporal blessing that has spiritual lessons, too.   

Life can be really hard, and when opposition or challenges turn up the heat, it can feel impossible to find relief.  

It has, for our family, felt like one hard after another for five years now.

It has nearly squashed us physically, drained us financially, and drowned us emotionally.

But we will be okay.

We are troubled on every side, yet not distressed; we are perplexed, but not in despair; 

Persecuted, but not forsaken; cast down, but not destroyed; 

~ 2 Corinthians 4:8,9

We are a family who does hard things.

We know this.

What we are learning, though, is how to find relief.

Relief comes, sometimes, from strangers who don’t know you are hungry when they bring you extra eggs from their chickens.  Relief comes, sometimes, from gallons of milk from the bishop’s storehouse.  Relief comes, sometimes, from friends who plop a piece of meat on your own plate the size of what you would feed your whole family at home.

Sometimes relief comes through hope, like when your friend surprises your children with t-shirts, or another friend drops off the cutest trike ever for your baby who might be able to breathe well enough to try it, or friends who host all eight of you for hospital week out of town.

Sometimes relief is palpable, like when you have a good counselor, or get a hug from substitute parents, or finally get to sit in your comfy chair at the end of the day.

Sometimes relief comes from daring to ask for help, being bold enough to receive it, and staying still long enough to let it sink in.

That’s how air conditioning works when it’s a hundred degrees inside your house: you have to get it in the window first, then plug it in, then just sit awhile.

Sometimes, relief comes in the waiting and the enduring and the noise of a fan that means the machine is doing its job.  The heat is pushed away before you feel the cool, and you stop sweating before you realize the temperature has dropped ten degrees already.

Sometimes, you only need the temperature to drop a few degrees before things feel better already.

שקת, or shaqat (shaw-kat), in Hebrew means “to keep quiet” or “to be at peace”.  

This is in contrast to what is not-quiet and not-peaceful around you.  It means to work at resting, at lying still, at pacifying the conflicts within and around you.

When you reach that state of peace and stillness and quiet, the ק changes to ב and you get שבת – Shabbat.  

The Sabbath.

I have written about the Sabbath before, but here is something important I have learned:

The Sabbath is a temple in time, in which and during which, we can be taught by the Lord.

Read that talk to see how I conclude that, but I’m serious about it.

Finding relief, and creating space in which we can rest, and doing the basic things required to care well for ourselves is actually what keeps us present and available and participating in the spiritual experience.

It’s why not doing those things leaves us tired, and empty, and struggling.

It’s easier to just run away, or quit, or give in to despair.  

Or maybe you have been told just to push through, to force yourself to endure, or to complicate things by trying to prove yourself.

Be still.

Breathe the cool air.

Let relief come through silence, through rest, and through the peace that passes understanding.

Shabbat Shalom.

Kanso: New Cochlear Implant Processor

We had a surprise box delivered this week! 

My new cochlear implant processors that we have been waiting on for six months finally arrived!  

It’s an upgrade with better sound, but also has brand new features.

One thing it is not: rechargeable.  We have had rechargeable implants for years now.  Going back to batteries feels like regression.  

That makes me nervous.  Batteries are a pain.  Each processor takes two, and you never know when they will go out.  I have enjoyed the freedom of just having my batteries charged during the night and being good to go for my long days.  But, worst case, even if we don’t have money for more batteries, I guess I can just go back to my old processors since I still have them.

But the new features are super exciting!

It’s the Kanso!  And it’s so tiny!

For comparison, here is our current processor (with covers so you can see them more easily):

The part on my ear is the computer processor and the battery, then the coil goes to the magnet that connects it to the part inside my head.

The new one is just a small piece with everything in one, so nothing sits on my ear!

It comes with all kinds of tools and gadgets, for maintenance and also for new things like streaming by Bluetooth now!  I can for the first time, listen to podcasts and music and audiobooks from my phone!

Even though I am frustrated to be reliant on batteries again, putting them in was super easy:

It’s so tiny!

There are little loops to hook onto my shirt in case it falls – like a child’s – but I have to get my magnets sized first.  If they are too loose, the processors fall off too easily.  If they are too tight, it can cause wounds from pinching the skin from where the implants are in my skull and the scalp that is over them.  Mine are really loose right now, so they fall off a lot, but new magnets have been ordered and are coming.

There are so many new sounds I can hear, and so many combinations of sounds.  Sometimes that is terrifying.  Some things are really exciting.  I have been playing cello music all morning, and that has been very soothing.  Technology is amazing!

Sabbath Adjustments

Mama said I could have bread.

No, Mama said the doctor said no bread.

Mama said I could have water.

No, Mama said the doctor said no water.

Mama said I could hold my baby doll.

Mama loves when you hold your baby doll.

This was Kyrie’s discussion with Nathan just before sacrament was passed.  

She loves taking sacrament.  We talk about it a lot at our house, mostly because we all need so many second chances and fresh starts and help renewing covenants to do better and be kinder and focus more on helping others and being grateful for the atonement.

But also, if you had nothing in your mouth for the last six days, you would be pretty excited about a piece of bread and swallow of water, too.

Except she cannot.

We have been praying for her for this moment, praying to know how to help her, praying that somehow we could get through this together, where we continue taking sacrament even while she gets used to not taking sacrament, praying to help her adjust to this new experience without shrieking that disrupted everyone else’s experience.

And our prayers were answered when Heavenly Father sent us a ladybug.

Good job, Springfield!

She did shriek, Ladybug!, right in the middle of sacrament, but it was a shriek of delight and then she settled down enough for me to take sacrament before slipping out with her and her ladybug to the great outdoors.

When we get back to our own ward, we will talk about preparing syringes that can be on the sacrament trays for her (especially since we sit up front anyway), so that she can still experience a form of partaking as she is able.

We are all learning together, but at least a ladybug saved us from it being traumatic today.

What was traumatic was the message we received that with Kyrie this sick already in fall, before winter even got here, that they want us to go ahead and pull the children from public school already and bring them back home to homeschool to keep Kyrie safe through winter.  It’s sad the children didn’t get a longer experience this time or that Mary couldn’t just attend school with them, but they are excited to be back home and enjoy adventures.  It does scare us some that they are putting her own precautions so early, and we returned their call to see if she can go to nursery or even church at all, or how strict they are going to be this time.

We attended sacrament meeting in Springfield, though we did not get to see my brother’s family.  There was getting ready drama before church, though, when a couple of the children were not paying attention or following directions or helping the others.  I finally fussed at them, just to get them out on time.  But it felt gross, and I felt guilty. 

They felt badly, too, for being naughty.  We talked about this later, and they felt terrible for being disobedient and I felt terrible for fussing.  When they picked their consequence of not having cookies today, I told those two I wouldn’t get cookies either because I am also learning.  

Then I promised them that if they prepared for sacrament and really thought about it, and practiced paying attention to the talks, there would be something just for us to help us do better.  And the very first talk was a whole cookie analogy about obedience!  They were so excited, and I loved seeing it come full circle so we could get to that increase of love place after a rough start to a day… that’s my favorite part of sacrament meeting, having a fresh start.

We have some pretty specific stuff we are working on as a family, but it’s also true we have come a long way.  There is something special about offering grace and mercy to each other.  And ourselves.

By the time our meetings were over, we were also hungry for lunch!  We utilized the building’s kitchen for our picnic before setting off for our drive home.  Yummy!

We loved that there was a table set up for the children!  It was perfect!   They gobbled sandwiches and chips and refilled water bottles for our short drive home.   I fed Kyrie in the car, and she slept while we waited on the children – but not before busting out with THIS SONG.

We are quarantined for two weeks now, and waiting to see if we can go to church the next two weeks or not, and when we can visit grandparents or friends safely.

Right now I am scheduled to return to work October 4th, after our return from speaking in Salt Lake during leadership training and consulting with Clinic after all the latest results for Kyrie have been compiled and forwarded to them, our pediatrician, and the palliative care team.

Kyrie is sad to be leaving our host family, the Evansons.  The children are sad to be leaving school.  Mary is sad she didn’t even get to try to go.  Nathan is sad one of his shows isn’t on Broadway when we ask for our Make-a-Wish trip to New York.  I am sad I don’t know how to pay for another trip to Cincinnati in three months if I don’t even get to work this one.

But all of us are grateful to be coming home with a breathing baby girl who is still alive, and all of us are confident in Heavenly Father’s promise of sufficient for our needs.  Barely avoiding a chest tube, and scaring us with a little coma time, we are glad to bring her home with us – pneumonia and all.

And, I managed to get the children their afternoon snack during the time Nathan was changing Kyrie, so we got through that one easily without hurting her feelings.  Once we get home, we will negotiate it more as we all get used to this new way of life.  But for today, it was gorgeous, and everyone enjoyed just enough playtime to stretch out cerebral palsy bodies and debrief autism brains and let parents breathe for a minute – even though it was Sunday, and we didn’t stay for extra long playtime, just enough for their bodies to breathe and Kyrie’s sats to go up.


We were very glad to arrive home safely, and with Kyrie in tow.

She was very glad to be back in her own bed, as were we all.

Bodies and Temples

This morning at breakfast, a man came up to compliment the children on their good behavior.

He asked them if they slept well.

Alex piped up, “Oh, yes!  We had our own bunk beds!  It was so cool, and just like at home!”

The man said, “How did your mom and dad like bunk beds?”

Alex quipped, “They are Mama and Papa.  They do not have bunk beds.  They have one big bed, and Mama told Papa it was the best kiss he ever gave her.”

Classy.

While the man thought this was as funny as I thought it was embarrassing, we had a little more serious experience later.

Nathan took his turn to go down and eat (since we are rotating while Kyrie adjusts), and I was working on getting children through turns of getting teeth brushed and dressed in their clothes.  The other children waiting their turn were watching cartoons in the bunk bed room.  The cartoon apparently finished, and instead of going to another cartoon or even to older child programming, it went straight to adult programming with a movie opening with a sex scene!

The kids responded well, telling us right away, but we still cannot take away what they had already seen.

It was, by default, and once again in a hotel room, another opportunity review what we know about pornography.

First, we praised and encouraged them talking to us about it right away.  That’s really important!

Next, we made sure to call it what it was:  pornography.  We said the word out loud, and let them say the word out loud.  We talked about how the world is so used to it that they don’t even always notice it is happening.  We talked about how turning it off right away is really important, like they did, because the more you watch it the harder it is to stop watching it.

Then we watched our family’s favorite pornography video, which we have watched many times before:

 

We talked about how bodies are not bad, just super special!

We talked about kissing (which is the only word they used for any of what they saw, even though they saw a lot more than that), and how kissing isn’t bad, either.   It’s just super special like bodies are special.  We also talked about the purpose of kissing, which is to help build relationships to be super strong because life is hard sometimes.  We talked about the good feelings that bodies can have because we are designed for those good feelings, so that we can build families and happiness and work hard to take care of each other.

We talked about how someday they will be mothers and fathers, and how those spirits are already waiting and helping and cheering them on as they prepare to be married in the temple someday.

And then we emphasized that by going to the temple (so glad we were in St. Louis where this is one!), and had another little lesson about temples – including how our covenants to take good care of our bodies, like not drinking alcohol or touching bodies out of marriage, and also things like eating healthy food and modesty and serving others, help prepare us for going to the temple.

 

We talked about how glad we are to be an eternal family, and how grateful these little bodies with their magnificent spirits have joined our family!  

Then we celebrated by using our bodies at the City Museum, where the children got to climb the walls and ceilings and try all kinds of cool things!  There were ladders and ropes and nets and it was amazing!









Planning to spend the night in Springfield so as to visit with my brother meant we only had a three hour drive today!

But we couldn’t leave St. Louis without a new picture at the arch!

We even got to see some horses!

We only had to stop once to play on the way since we didn’t have very far to go and she was sleeping and breathing:

By the time we got to Springfield, this girl was worn out, but back to her happy “normal” self of silliness.

Speaking of silliness, when we went downstairs to go swim tonight, we forgot the key to get in the pool.   These two volunteered to go get it, and have been practicing maps and finding rooms so I let them.  But when they came back, they only had the breakfast coupon and not the pool key.  It was so funny!  They did make it to the pool eventually!

Heading Home

Look who woke up happy this morning!

We were glad to get a good start on the road this morning while Kyrie was still in a good mood.  Only two of us can take our ears off when she screams!  We also had such amazingly well-behaved children all week that everyone got a new stuffy this morning! 

Kyrie actually slept long enough we made it more than halfway to St. Louis before we had to stop, so that was a relief!  It was good to see her getting some rest as she continues to recover.  It will take several weeks to get her stable again, and then that just in time to go back again.

But when she did wake up, she woke up hungry!  We were grateful for a rest area only three miles away.  We were also grateful for the sandwiches and grapes we had ready for everyone else!

She was upset she did not get what everyone else got, but we talked about it again.  She settled down more quickly than yesterday once she actually had food in her belly.  Her love of being a helper makes it easier to redirect and distract her!

We loved the playground at this rest area, and had a good playtime break before loading back up for only a few more hours’ drive.

Kyrie really wanted to play, but she just isn’t well yet!

We are so grateful to the Evanson family for hosting us, and for all who helped or donated so that we could get there and back home again.  So many of you have so generously, or shared points for hotels or gift cards for meals, and we are so grateful! Our friend surprised us with this family suite that had rooms with bunk beds for the children!  They loved it!

And, of course, their greatest reward:


It was an easy day, with an easy drive.

We have donated tickets to a museum tomorrow before we head to Springfield, where we will spend the night to visit with my brother’s family.  We will go to church with them, and then head home after.

We are grateful for easier, resting kinds of days, even on road trips!

Recovery

This toddler may have pulled off another miracle awakening yesterday, but today she woke up with ‘roid rage!

She was so mad!  She screamed “No! No! No!” all morning even when nothing was happening or no one was bothering her – even in her sleep!  She had not forgiven us, and not forgotten her traumas from yesterday, and there was nothing we could do but wait for the steroids to flush out of her little body.  It was almost eleven in the morning before the screaming was intermittent instead of just constant.

By lunchtime, she calmed enough we could read our favorite The Cat in the Hat.

  

But when we had to invade her again to change her pull-up and do a tube feeding and she realized she wasn’t going to even get to try to eat lunch by mouth, she started screaming again.  It was so very sad!  There was just no way to comfort her.

Nathan took over holding duty, so the rest of us could go to the park once homework was finished.

Then we had a jumping contest.

And chased some ducks:

When we came home, Kyrie was awake from nap but screaming again, so we played outside some more, enjoying the fields and forest and fresh air:

Our excitement was enough to bring Kyrie out to see the commotion!  Even though she wouldn’t let anyone talk to her or touch her, at least she wasn’t screaming.  She played with chalk by herself for a long time:

Then she heard the others playing with the chickens, and she had already declared herself to be the boss of the chickens!  

Finally, a visit to her chickens brought that smile back to her face!

Since she was calm again, she and I had a chat about yesterday.  I apologized that I couldn’t stop them or help her or make it easier.  I told her I was so sorry it was so awful.  I told her the doctor’s really were trying to help, but I also understood that it was terrifying and no fun.

I was so scared, Mama, and you gave me to them, and that made me so mad.

I am really, really sorry.

I forgive you, Mama.

I cried.  Again.

She and I were better after that.

She fussed again at dinner when she could not eat by mouth, but we tried to offer her the same food through her tube.  That helped normalize things a bit for her.  We are all learning.  After dinner, she calmed down again and spent time playing with the other children almost normally – except that when anything happened, she got mad, really mad.  But we only had a shriek here and there instead of screaming, and she settled more easily.  Hopefully, she will feel even better tomorrow.

Mostly, we are relieved to see this smile back, however fleeting.

Nevertheless, She Persisted

Today was surgery day number two:

We even got to see our friend Marianne, the chaplain from chapter eight of our book!

Nathan took Kyrie for some walks while we waited our turn, but they were so worried about her airway we didn’t have to wait very long.  She got an albuterol treatment beforehand, and then they came for her right after that.

A nurse came in and said she knew Kyrie was medically complex, and asked if she needed a catheter.  Kyrie said, “Don’t you dare!”  It was so funny!

Meanwhile, the children were playing back at our host family home while we waited.

When we got back to anesthesia, they tried having us lay her down on her back so they could put the mask on her.  That’s when she freaked out, because she has never laid on her back.  She would have taken the mask like a breathing treatment if they let her sit up.  

Regardless, it’s a heartbreaking thing to watch your child struggle and then see the life drain out of her as she goes to sleep – and I hate that she has all these medical procedures that violate her body like that.  We tried hard, asking which arm she wanted for this or that, or if she wanted Mama or Papa to hold this or that, or if she wanted blood pressure on her arm or leg, etc.  But there are no choices about anesthesia, and she knew we had again betrayed her.

Some results came quickly, and some we are still waiting on…

She has new nodules growing on her vocal cords, probably from so much coughing and choking, that can get in the way of transitioning between breathing and swallowing, and also impact speech (which is already super nasally from the cleft palate and wonky uvula).

Her “prominent tongue base” is blocking her airway, which we already knew, and is a significant problem.

Her epiglottis is also too big and the wrong shape, causing problems with managing her secretions (aspirating on them) and breathing and feeding.  And beyond that, her airway is still too small.

Beyond that, her right lobe of her lung was full of fluid.  That’s the same lobe she usually gets pneumonia in, and so they think she is continuing to aspirate more than they thought… and so they made her NPO!  That means nothing by mouth!  Like at all, ever!  From now on, she has to be fed exclusively from the g-tube.

(Think about that.  No birthday cake.  No popcorn on movie night.  No apple juice.  No chocolate milk.  No crackers – that child has lived on crackers and cheese since she could walk!  Not even sacrament bread and water.  No snacks in nursery on Sunday.  Nothing.)

And, instead of coming back next year, they want us to come back in three months.

We were shocked, even though we know we have one sick little girl.

In the meantime, the children had a Moana movie night with popcorn and everything!  How’s that for special time to keep them calm and distracted?  They were so worried for her!  Time and again the blessing has been fulfilled that their prayers would save her.


I was relieved they were safe and distracted, because we were terrified.

We nearly lost Kyrie again today.

She struggled with extubation, as she does, and they took us back to PACU in case she passed and called the chaplain for us. 

But they were able to extubate her, with high flow heliox (helium to make the oxygen lighter to make it easier to get it through her small airway). 

She was in a coma, but breathing. 

We fought through a coma and a collapsed lung and a rough awakening that made her mad as anything, but by the end of the night did not have to admit her since we already have palliative care.

 She *is* breathing.  And she is home with us here.  She is breathing.  She is breathing. She is breathing.

I’m not yet, but she is.

We wait now for more test results, including the big one of the MRI about the stroke issues in her little brain… and the pictures of her jaw for information about options for her airway (another jaw distraction or a trach, etc.).
And this girl?  After so many scares and such a hard week, she is breathing.  That’s all that matters.

Except for what matters to this girl.

She has now been told she cannot eat anymore, and she is mad as she should be.

But I love bananas, Mama!

I cried.

She cried.

Nathan went to the grocery store in the dark, picking up banana baby food.  We used a slip tip syringe to inject it into her belly through her g-tube, and then let her lick the very tip – not enough for any substance even for secretions, but enough to think she had a taste.

Thank you, Mama.

I love you so much, Mama.  

And I also love bananas.

What do you say to that?

We got this, baby girl.

We are a family who does hard things.

And then she gave herself some yogurt, which we also got since she had so much medicine today.  I helped her draw it up and get out the air, and she leaned back on our pillows that prop her up so she’s not really flat on her back.  She opened her Mickey button by herself and put the syringe in by herself.  And then we pushed together.

Because I’m hungry, Mama.