It's February! You know what that means?

Isaac's second birthday is almost here!  That's right, in just 11 days our sweet, bright, funny, handsome little dude will be two years old!  When Isaac was first diagnosed, we only dreamed this day would come.  We gratefully celebrated his first birthday, then cautiously settled back into daily life.  We had some scares over the summer, but by Thanksgiving we felt confident that we could hope for a celebration of Isaac's second birthday.  Hope is such a strange feeling for us and for those who know and love Isaac.  We have every reason to hope and believe that he will live to see his birthday.  We don't have pits in our stomachs constantly aching with that sharp, consuming fear.  But every single day we live with the reality that Isaac is strong but fragile.  Isaac is a fighter, but if we didn't react in time with just what he needed to keep on breathing...It is a reality, but one we try to push aside and ignore in favor of the amazing and beautiful moments of every day. I think of Emily Dickinson, "Hope is the thing with feathers that perches in the soul-and sings the tune without the words- and never stops at all." Hope never stops, yet I feel it both perching and preparing for flight.

Handsome dude!

Our son is an incredibly smart kid.  I wish everyone could see him use his talker, control his switch toys, and manipulate his mommy and daddy for more cartoons.  Isaac has learned exactly how he needs to communicate with us if he needs something.  Jeremiah and I know his different sounds, how he tells us he needs to be suctioned, that he's had enough, that he wants a turn playing, that he needs to be moved or have his diaper changed, or a dry cloth under his head, which book he wants to read, and when we have misinterpreted what he said.  He likes to be silly, in his own way.  Last night, Jeremiah and Natalie were off at a Daddy and Daughter Dance.  Isaac and I were playing a game where he holds onto a small ball and drops it on the count of three. When I would ask him if he wanted another turn, he would say his version of "yeah." He would open his fingers for me, and as soon as the ball got close to his hand, he would clench his fist to keep me from giving the ball to him.  I would laugh, he would giggle, and eventually he would open his fingers to take another turn.           

Isaac playing ball, but not teasing me!

The past month has flown by, as I'm sure is true for everyone. I had intended to write a post just after Christmas, but then suddenly it was January, and now February.  We managed to stay busy despite being snowed in for all but two days in January.  By snowed in, I mean that the snow we got before Christmas is still on the ground, now taking the forms of snow, ice, and mud covering half of the surfaces in our neighborhood.  Those conditions are ideal for Natalie, who will happily tromp through all of it (and has two mud-caked pairs of boots to prove it), but not so great for Isaac, whose stroller is designed for dry sidewalk...

We saw The Nutcracker in Longmont, and Sharon gave the kids a beautiful ornament!

Jeremiah gave Isaac a pre-Christmas haircut :)

The day of the snowstorm, I stopped by Wal-Mart on my way to work.  I had to pick up a sled!  I was not the only person with the same idea, but I managed to grab one of the last three.  Jeremiah and Isaac did some laps around the front yard.  He was skeptical, but hey, it was a new experience!  Later, in January, Natalie and I went sledding on the hill here in Mead.  We broke the sled, but it had a good run.  Or seven, to be exact.

 We have managed to get to almost every Song and Story time over at the parish hall.  Isaac loves it. I have a picture of him below (with one of his nurses behind and a friend in front), shaking the eggs during a song.

We had a lovely Christmas, and it already seems so long ago! The four of us went to Christmas Eve Mass at our local parish.  We always try to sit in the front pew at Mass, because Isaac can sit in front of us and watch the proceedings (and squeal with delight at the sight of Father Alan, the Eucharist, the lector, the altar servers, etc.).  We arrived 45 minutes early, but we still weren't there soon enough to nab the front pew.  Thankfully, the family in front graciously gave us their spot, so Isaac was able to see the goings on and watch all of the kids who sat around the altar for the service. Jeremiah helped him place an angel ornament on the tree (a tradition at our church). We sang Silent Night, and I choked up and cried.  I have always had a hard time singing that song on Christmas without getting teary eyed, but this year I full on cried.  I was just so happy to be standing there at my husband's side, looking up at the altar with the manger scene, surrounded by children- including both of our children. One or two older boys gave me concerned glances, and tried to look tactfully away.  So. Sweet.   

After Mass, we came home and had dinner together. Natalie left cookies out for Santa (along with an impressively recognizable drawing of a Christmas tree), and the kids went to bed.  

 In the morning, Natalie woke up and opened her stocking.  Isaac slept in a full hour and a half later than usual, and Natalie played patiently while she waited for him to get up. Once he was up and ready, we opened presents.  My uncle Neal and Jeremiah's mother, Sharon, joined us, and I loved having some extended family for the day!  We had lunch, talked, and tried to convince Isaac to take a nap (he did not).  It is difficult to describe the joy of celebrating another Christmas with both Natalie and Isaac.  My heart was full, as it is every day, but with the added graces and blessings of our Savior's birth.

In awe upon first seeing his new dragon puppet in the stocking

Yes, I keep dressing my kids in matching clothes, reindeer pajamas included.

Playing with Isaac's new trains before bed
 on Christmas day.

I have so much more to say, but I will leave it for another (coming soon!) post.  I hope that you all ring in this next month with prayer, kindness, and acts of true love.  Be patient with one another, be gentle, and be not afraid to speak what's in your heart.  There will always be hope, whether you feel it perching or taking wing, because there is always Jesus Christ, our God who knows you and loves you still.





From today's Mass readings:
"Before I formed you in the womb, I knew you. Before you were born, I dedicated you..."  Jeremiah 1:4-5

"I will sing of your salvation.
For you are my hope, O Lord,
my trust, O God, from my youth.
On you I depend from my birth;
from my mother's womb you are my strength."  Psalm 71

"Brothers and sisters:
Strive eagerly for the greatest spiritual gifts.
But I shall show you a still more excellent way.

If I speak in human and angelic tongues,
but do not have love,
I am a resounding gong or a clashing cymbal.
And if I have the gift of prophecy,
and comprehend all mysteries and all knowledge;
if I have all faith so as to move mountains,
but do not have love, I am nothing.
If I give away everything I own,
and if I hand my body over so that I may boast,
but do not have love, I gain nothing.

Love is patient, love is kind.
It is not jealous, it is not pompous,
It is not inflated, it is not rude,
it does not seek its own interests,
it is not quick-tempered, it does not brood over injury,
it does not rejoice over wrongdoing
but rejoices with the truth.
It bears all things, believes all things,
hopes all things, endures all things.

Love never fails.
If there are prophecies, they will be brought to nothing;
if tongues, they will cease;
if knowledge, it will be brought to nothing.
For we know partially and we prophesy partially,
but when the perfect comes, the partial will pass away.
When I was a child, I used to talk as a child,
think as a child, reason as a child;
when I became a man, I put aside childish things.
At present we see indistinctly, as in a mirror,
but then face to face.
At present I know partially;
then I shall know fully, as I am fully known.
So faith, hope, love remain, these three;
but the greatest of these is love."     1Corinthians 12:31-13:13



 

The Most Wonderful Time

Greetings to all!  We have had a busy month, and Isaac has been doing really well.  We had a quiet Thanksgiving because I had just had hernia surgery earlier that week.  I made a pie and mashed potatoes, and served turkey sandwiches.  Isaac fell asleep watching football and missed most of the meal, but he woke up in time to watch us eat dessert.

My brother came down from Montana for a short visit during the first week of December.  It is always great to see him, and Isaac and Natalie can't get enough of their Uncle Dan.

One of the mothers from Natalie's preschool, Kendra, invited our family to join her family for a private visit with Santa Claus up at the mall in Loveland.  She had reserved time, and knew that we were unlikely to take Isaac out in the cold or to wait in line with tons of other adorable and potentially germy kids.  It was an offer we couldn't refuse, so early one Monday morning we hurried the kids through their morning routines, dressed them up in their Christmas outfits, and went to visit Santa.  Kendra took some great photographs on her camera for us, brought cookies for the kids to give to Santa, and a copy of The Night Before Christmas. Santa sat and read the story to Natalie and Isaac, showed them how to make candy cane hearts, told them all about reindeer food, and listened as Natalie told him all about what she wants for Christmas (and then all about our cats). It was so sweet to see her snuggle close to Santa as he read, and to see how Isaac stared at the large red man in interest and amusement.  I decorated our tree and broke out the decorations right after the first Sunday of Advent, because I can't help but be in the Christmas spirit with these two little sweethearts in my life.  Natalie loves to play with the various manger scenes and statues of the holy family, as much as she likes to walk around pretending to be Santa.  It's just wonderful!

Our good friends, the Goulds, also took Natalie to see Santa Claus and do crafts at the library.  She had so much fun being with her friends, and it was so good for her to get out with them!  That same night, Natalie's preschool had a float in the local lights parade.  Jeremiah and I bundled Isaac up and took him to watch the parade.  He stayed warm and bewildered the entire time, being outside after dark and seeing a crowd of strangers on our normally empty main street.  But he didn't freak out, which is honestly what we expected of him!

Natalie's preschool had a Christmas program last night, which was just as sweet and funny as you would think.  A bunch of three year olds, dressed as angels and shepherds, singing the words that they knew, some of them struck dumb with stage fright, others twirling and shouting and hamming it up.  Isaac wasn't sure what to think, but he was amused at least with seeing his sister up on stage.  I'm so glad we were able to take him, despite the snow making it impossible to use the ramp around the back side of the old, historic church (the one from a Die Hard movie!).  We had the help of another dad, plus Jeremiah and my dad, to hoist Isaac and his stroller up the front steps.  Isaac loves being around other kids, and a couple of Natalie's classmates have met him before and aren't too shy about saying hello.

A few weeks ago, we decided to try getting Isaac ready early enough in the morning to attend a local song and story time.  We were a bit late, but it was worth it!  We got to see a good friend of Natalie and Isaac's, a 7 year old girl who used to live across the street.  She would come over almost every day to say hello, and many days she could stay for a while to play.  She was amazing with Isaac, giving him choices, building towers for him, putting on shows.  We hadn't seen her since they moved on Halloween, and she immediately came over to say hi.  She spent the rest of the story time including Isaac in the music making, the coloring, the whole activity. Unfortunately, she isn't usually at story time (turns out the elementary school doesn't always have a late start...). But she set a great example for the younger kids, who don't know what else to do with Isaac besides look at him with curiosity.  We have gone back every week since then, because it is only a few blocks from our house, they tend to start a little late, and I love helping Isaac participate in such a normal, toddler activity. It starts the day off well, and gets us all out of the house for an hour.  And I can't say enough for the woman who runs the story time, she takes care that Isaac can see, that he gets a turn to touch things and hold things, and she cleans the shaker eggs after every session!

We also took the kids to a craft day at the Longmont Museum,  It's called Discovery Days, and it's something the museum hosts three days a week.  Each week is a different theme, and last week was transportation. Isaac loves trains and cars, so we thought he might get a kick out of it.  He did enjoy holding the paint brush to paint a cardboard rocket and a wooden fire truck, but he cried whenever I took it away to get him more paint.  This was our first time going, so we didn't have a clue what to expect.  When we arrived, the nice woman in charge asked in shock, "You didn't pay for two kids did you?"  I said yes, since we had two kids. She replied, "Well, yes, but...he...he won't...he can't..."  I saved her from her trailing sentence by saying "We will help him make the crafts."  I know she was probably just trying to be considerate, to save us a few dollars, but it still struck me as so odd.  I forget that many people are taken aback when they see Isaac.  I forget that people see him and see a disability.  I'm so glad that I forget that, but it can take me a moment to recover when we encounter someone who isn't sure what to say.  I suppose that speaks volumes for the people we normally encounter in a week-our entire church community, our neighbors, local business owners, family, friends, my co-workers.  They all see Isaac for the whole person that he is, instead of being distracted by his mask or his machines.  One of my favorite parts of the week is taking Isaac to Mass.  He loves being there, for one thing, sitting way up front where he can keep his eye on Father Alan, the servers, the lectors, the crucifix, the alter, the flowers, and the angels.  But I love seeing the people walk past him after they have received communion or a blessing from Father.  Some people are in prayer, and their eyes are downcast reverently.  Adults who know us better will smile at Isaac, give him a wave, a little squeeze on his arm, or a blessing.  And the kids, they are the best.  Last week, a little girl of about 18 month just stopped right in front of his face, flashed him a huge grin, and waved, practicing her "Hello!"  Then a young boy, maybe 10 years old, was watching Isaac (who was watching him back) as he slowly walked past.  Suddenly, the boy laughed out loud and smiled at something Isaac had done.  That kid had the most honest look of joy, just making a connection with Isaac.  I love watching the children, they don't try to avoid look at Isaac, they don't hide that they are curious, and they aren't afraid to ask us or their parents what happened to him.

Isaac has been a rockstar with his eye gaze device!  Last week, when Natalie was gone for the morning, Isaac used his talker to say "Natalie, let's watch TV, Veggie Tales."  Then he said it again, and again, and again.  We kept telling him that she would be home later, but for now we were keeping the TV turned off.  We would get him to play a game, and he would exit the game and repeat his request to Natalie.  An hour or so later, after he had been playing a memory game contentedly, Natalie came home. I asked him to tell Natalie what he wanted, and he immediately left the game, found his Natalie page, and told her he wanted to watch Veggie Tales with her.  He has been similarly amusing with his requests to read specific stories, repeating himself over and over because he can't ask more loudly or in a more insistent tone of voice.  It's amazing.  He has memorized the placements of the 6 cards for his memory game, so he breezes through the game over and over.  We have watched him win the game and start again 10 times in just 2-3 minutes.  Again, he's amazing.

And he's growing!  We had to increase his calorie intake, his lung volume, order a larger stroller, and get him another full-size crib for the living room (where we do his breathing treatments and he takes naps).  I'm grateful for every milestone.  I always see people posting pictures of their little kids, lamenting how quickly they are growing up.  I say rejoice in their growing and changing!  It's an amazing gift.

Christmas is one week away, and I hope that you all have time to be quiet, to be disconnected from all of the news and the social media, to be connected to God and your loved ones.  I ask for your prayers for those who have lost someone this year,especially: for the family of Pastor Laura, who finished her fight with sarcoma a few weeks ago; for the family of Auni Naulu, who would have turned two years old this month, but is instead in heaven; and for the family of Gwendolyn Strong, who never gave up, but was ready to go, and who has inspired thousands of people with her living and dying.  There are many other parents who lost their children to SMA this year, and my heart goes out to them during the Christmas season.  God bless you all, and Merry Christmas!

So Thankful For So Much

 I have taken quite a break from writing updates, posting to the archives, or even really thinking about this blog. This is because we have been making the most of the sunshine and recently departed autumn weather!  Today, with the temperatures in the 40s and the sun heading down over the mountains around 4:30, I spent most of this afternoon organizing digital photos and working on our Christmas card.  Going over all the photos from the past two years made me almost boil over with gratitude (and please forgive the very photo-ful blog post- I have yet to master formatting on this site...).  I can not believe how far Isaac has come, and I have great hope that he will be with us for a good long while.  Natalie is fighting off yet another cold, and Isaac seemed content to watch football, nap, and play with Jeremiah (who was content to watch football, nap, and play with Isaac).  Last weekend, some friends asked me about our minivan, and gave me a well-deserved hard time for not updating everyone.  I seriously thought I had already done that, so... my bad! And thank you Ellen and Liz for the gentle nudge.

Hanging in the backyard!

Isaac and Natalie swinging

So here goes, I'm going to try to make this quick so I can get to bed, but brevity is not my strength.

-Our van is fixed!  We actually got it repaired and returned to us while Isaac was in the hospital in September.  My parents' neighbor here in Colorado can do pretty much anything car related, and he made the van look and function better than it had before the accident.





-Jeremiah is still recovering, though he is back to being able to help with treatments, drive, and generally be around.  He saw a neuropsychologist who wants to do some further testing in order to devise a treatment plan specific to the mild cognitive deficits that are a result of his concussion. Fun!

-Starting a few weeks before his last hospitalization, Isaac had several rough nights.  When he got sick, I attributed those nights to the fact that he was coming down with something.  He slept really well in the hospital, but after coming home it was back to the rough nights.  We thought perhaps he had just grown enough to be uncomfortable on his mattress.  So we switched out the small portable crib -that had barely enough room for his toes- for Natalie's old crib.  I found a toddler appropriate foam overlay to help reduce pressure sores, and happily bought some new Isaac appropriate crib sheets.  I honestly had thought I would never need to move him to the bigger crib, so it was a sweet moment.  With the room rearranged, Jeremiah built a shelf for Isaac's stuffed animals, knick-knacks, and night light (it's like a mini-nursery for him in our room, and he loves to watch his night light as he falls asleep, and coo at his animal friends when he wakes up). He spent over a week needing Tylenol and ibuprofen every 4 hours because he was teething, he had a reaction to the orajel, so we thought this could be contributing to his difficulty sleeping. But then a tooth popped through! So Isaac was healthy, he had a new crib, a better mattress, a tooth, but he still wasn't sleeping.  Ergo, I was not sleeping.  I think it was about 3 months of the poor kid crying in his sleep every 45-60 minutes.  So that meant every 45-60 minutes, I would get out of bed, roll him over, and gently pat him until he fell back asleep.  Some nights he would sleep for a 2-3 hour chunk, and he almost always slept well from 6-8 in the morning.  I was exhausted.  At Isaac's last check up with the muscle team at Children's, we talked with every member of his team, trying to figure out what it could be.  Let's try a new type of mattress, let's try an anti-anxiety, could it be reflux?  Lo and behold, after much deliberation, reflection, and a few more days of trial and error, we determined that Isaac's discomfort overnight was due to all of the extra fluids (water and pedialyte) we have been giving him during the day.  We started adding the extra fluids to his overnight feed, increased the rate at which he is fed just a little, and voila, we have a sleeping child.  And so, for the past week and a half, Isaac and I have both gotten some restful sleep.  Thank God. 

Jeremiah's birthday!

-Natalie loves pre-school more than anything, I think.  She talks about her teachers and her friends, she sings all of the songs for us when she comes home, and she is doing so well.  They had a little Thanksgiving program last week, so Jeremiah went and took a video for me.  I'm hoping we can all go to her Christmas program, if the little historical church where it's being held is accessible for Isaac.  Her teachers and her classmates' parents are amazing and generous people, and I am grateful that we chose Country Kids as her preschool!

My Sweet Ones

-My parents have returned to Illinois for the winter. I think they got home in time for a few days of nice fall weather.  We miss them, but they will be back for a few days in December!

Oh man, they love each other so much!

-Isaac is outgrowing his stroller, so the wheelchair rep is coming to our house in December to measure him for the next size. She also wants to measure our house, because it is fairly small, and the next size stroller is fairly big (think long, he lays flat and he is getting tall!).  We need to gear up for some more home renovations, because with the longer stroller, we won't be able to get Isaac into our bathroom.  We will likely move the door as originally planned, which will make me want to finally redo the kitchen.  But Isaac also needs a new crib for our living room, where we do his breathing treatments and he takes naps.  IKEA, here we come!  As soon as it isn't Thanksgiving week or snowing!

My brother Dan came to visit in October, and Isaac fit into my favorite 2T bear pajamas!

-I am having an umbilical hernia repair done this week, and while the surgery itself isn't a big deal, I'm not really looking forward to the recovery.  It also means I will be gone for one of Isaac's breathing treatments, and that just makes me nervous.  I am sure he will do just fine, because he has been such a big boy these last few days!  He has kept his heart rate and oxygen up during the treatments, instead of getting scared and bearing down and holding his breath when I suction his nose.  He has even fallen asleep the past 4 or 5 nights by himself, without me or Jeremiah rocking and patting his hip and back.  I'm so proud of him!

Superhero Halloween!

Cinderella and her mouse friend

-Isaac really is doing well.  We can hardly believe how big he is getting, how smart and sweet he is. His personality just shines through his eyes, his smile, his laughter (and his glares and cries and whines of impatience).  He still loves playing with Natalie, race cars, dinosaurs, and blocks.  He LOVES watching cartoons, and he has days when he isn't feeling great that all he will do without a scowl on his face is watch television.  But he also loves being read to, The Gruffalo, The Bunny Rabbit Show (and anything else by those authors) are his favorite.  About a week ago, Jeremiah had a stack of books out to read to Isaac, and he picked up the top book to read. Isaac started crying because he saw that Bunny Rabbit Show was the next book in the stack.  Jeremiah finally abandoned the first book because Isaac clearly had interest in NOTHING other than the dancing rabbit book.  He uses his eyegaze device frequently, though not as often as I would have it in an ideal world  (I mean, ideally, he wouldn't need a communication device), but he still uses it well and with intention.  He uses his eyes to play memory games, matching games, car racing, the piano, the drums, and to tell us what toy he wants, which book, which person, and what he wants to do.  And since he still has use of his fingers, he can still play with his switch toys also!  I'm on the lookout for a switch-adaptable train set for Christmas.  I might actually take his switch to Toys R Us and start opening boxes to try it out on different sets (after, of course, explaining to the manager and hopefully getting the okay:).  

Swinging on Isaac's 18 month birthday

-Some amazing people are doing very generous things for us! Thank you ALL!
          1. Debi Bancroft sells Simply Said home décor, and she is hosting an online fundraiser!  You can go to the Facebook page, Roar with Isaac Fundraiser, or find the site at Simply Said designs.
          2. Our church's chapter of the Knights of Columbus will be taking donations at the Mead tree lighting on December 5th and the Guardian Angels tree lighting on December 6th.
         3.  Black Canyon Distillery is hosting another fundraiser for Isaac!  They are having a bake sale and cake walk on December 5th, from 11-8, at their distillery (13710 Deere Ct, Longmont).




So, I kept it brief-ish.  I want to thank everyone for your continued prayers, support, love, encouragement.  And I want to ask you for your prayers as we continue into cold/flu season.  We become more and more isolated when viruses are on the rampage, and the short, colder days keep us inside. Please pray that none of us go crazy being inside for the winter, but instead come to enjoy and appreciate the hibernation.  Much love to you all, and Happy Thanksgiving!  Life is a gift, be grateful!

My best friend, Katie, visited in October with her daughter Lila (leaving her two boys at home in California with her husband).  We all went to a pumpkin patch, and Katie took some lovely photos!

This was either taken the Sunday before or the Sunday after Halloween...either way, it was a beautiful day for a walk around the lake!  It's a 3.5 mile walk, complete with perfect mountain views, bald eagles, and a pirate ship playground!

Archives: 6/22/2014 The Penthouse

Posted Jun 22, 2014 5:46pm

Isaac graduated from the PICU yesterday! We are up in the penthouse now, on the 9th floor of the hospital, which is primarily a pulmonary floor. The PICU doctors and respiratory therapists felt comfortable moving Isaac, even though he still qualifies for the PICU due to his oxygen/bi-pap needs. He's doing really well up here, and we are excited about the private bathroom. The pulmonology team has a system going for weaning Isaac from the bi-pap. Today he has done his first 90 minute session off the bi-pap with 5L of high flow oxygen. This afternoon he will do another 90 minutes at only 4L of high flow, with a break in the middle for a suction, cough assist, and some extra breaths with what's called the easy-pap. Each day brings new goals and plans for Isaac's care, and there is no set plan for going home, no specific goals to get us there. But we are heading in the right direction.

In other news, Happy Anniversary to my parents today! They are both here in Colorado with us, and hopefully they will sneak away for dinner or coffee or something together.

Archives: 6/22/2014 Answers in a Baby's Smile

Posted Jun 22, 2014 5:19pm

This is daddy (Jeremiah) doing an update, since Jenna has done all the others...

My wife, Jenna, and I are mates for life. We are very different in many ways. She is warm and compassionate. I tend to be cold and calculating. She is the worst procrastinator I've ever met. I prepare so far in advance it is sometimes ridiculous. She tends to give people the benefit of the doubt. I make people prove themselves. Jenna's faith in God is much stronger than mine. I'm an analytical researcher by nature, and if I don't see numbers and hard data to back things up, I question them and am very skeptical. I do believe in God, but I question Him. I know that my head would probably explode if I knew God's will for everything, but I still ask "Why?" I sometimes find myself shaking my fists at the sky and screaming, just taunting the Almighty to a showdown. Then I find myself on my knees, sobbing and thanking God for allowing my hands the steady strength to revive my son when he almost died. Then I question God "Why did you let me save his life for it to be taken in a few short months?"

In the last four days, I've made a doctor and my 'shrink' cry. Not because I was mean to them, but because I asked them questions that they couldn't answer. They couldn't answer the questions not because they were under-educated, but because my questions have no answers. WHY?

All I know is that when I see my boy, Isaac Gregory, my heart skips a beat. When I hold him he looks deep into my eyes and smiles as if he himself is trying to answer my questions for God. His smiles make me feel happy and content. My time with Isaac is very precious to me and I will cherish every last minute of it. I know that when this purgatory that we call earth is over, I will get my questions answered, and I will get to teach my boy to ride a bike in heaven. That will be a good day.

Archives: 6/20/2014 Hiccups

Posted Jun 20, 2014 5:42pm

Isaac has the hiccups. It's just so darn cute when he has the hiccups. I once took a video of him, staring off into space, hiccupping. It was at least 30 seconds of just that. I sent the video to my sister, Kara, because I knew she would be as amused as I was. I will miss seeing him hiccup. I will miss seeing his scrunchy face that he makes when he's sleeping and needs to squirm a bit to get comfortable. I cry at least once a day, and last night I cried giving Natalie a bath. I cried because I know, unless we are granted a miracle, that I will never get a picture of my two kids playing together in the bathtub. I cried because I know Isaac will never build a block tower. I walked past the elementary school baseball diamond on my way to the post office, and I cried because I will never watch Isaac play little league. It's a daily struggle, remembering to focus on today, to refuse to focus on the impending loss. I mean really, he may never have wanted to play baseball anyway. Jeremiah and I remind ourselves and each other that Isaac isn't sick with something. Nothing is attacking him, he is simply being who he was designed to be. He is fearfully and wonderfully made, and he was made in a way that we describe as SMA1. He was created to go to God sooner than we think is natural, sooner than we will ever be comfortable with, too soon.

I read a quote the other day that gave me some peace, by a Dr. Rachel Remen. "Healing may not be so much about getting better as about letting go of everything that isn't you- all of the expectations, all of the beliefs- and becoming who you are."

Yesterday, Isaac did three sessions off his bi-pap, and he tolerated it well! So this morning, he got to try the high-flow nasal cannula at 7 liters of oxygen (down from 8). This evening, we're going to see how he does at 6 liters. As he progresses, the pulmonary team will decide when he's low enough to leave the PICU and head to a regular floor. He has been in a great mood today, smiling at everyone who comes in, laughing at Grandma, and sleeping well at naptime.

We continue to be amazed and so grateful for everyone's generosity of spirit as we get through our days. Every prayer, note, visit, meal, donation, toy, card, kind word, and hug is appreciated, and nothing has gone unnoticed. Thank you!

Archives: 6/19/2014 Sol y Sombra

Posted Jun 19, 2014 1:10am

"Back in high school, I read James Michener's "Mexico," a book more or less about bullfighting. One of the themes in the book is "sol y sombra," or "sun and shade," referring to the different seats available at a bullfight. I looked out the window from Isaac's hospital room this afternoon; clear blue sky on one side, with a perfect line of heavy rain-clouds to the west. After this sunny, beautiful afternoon came the equally beautiful thunder, lightening, hail, and rain. And every day of this hospitalization has felt like that, sol y sombra. Hot and burning sun, refreshing and cool shade. Warm and comforting sun, dark and chilling shade. It's a matter of perspective. And, you know, Colorado weather.

The PICU is full to capacity tonight. I heard two code blues this afternoon. Today I contacted our local area services on aging to ask about Medicaid for a child with a 'life limiting illness.' I called Families of SMA to ask about getting a car bed so Isaac can leave the hospital, when that day comes. I registered Isaac on the SMA registry for clinical trials. Maybe there is something that can help him. More likely there is some way he can help others. I comforted Isaac while he cried for almost 3 hours because he was so uncomfortable. What parent hasn't done that?

Isaac had three sessions off the bi-pap today, and he tolerated each of them very well. The middle session was an hour and forty minutes, a full hour longer than any other session. He had a Cough Assist session right in the middle, which extended his ability to breath comfortably. If I haven't explained, the CoughAssist is a machine that forces air into Isaac's lungs and sucks it out again, mimicking a cough. When he isn't on the bi-pap, he is on high flow oxygen- 8 liters, which is a lot. Too much to go home on. So we stick with the PICU until he can safely and comfortably tolerate 3 hour long sessions each day. After that we go onto a regular floor to wean him off so much oxygen, learn to use equipment, and then, God willing, go home. During the evening session of nasal cannula trial, I was able to try to nurse Isaac. I have to pump beforehand so he doesn't really get any milk, just a few drops. It took him a minute to remember what he was supposed to do. His swallow is very weak after 7 days of no nursing, not to mention the baseline weakness from SMA. But he enjoyed it, and I felt almost normal for a moment. He is resting very comfortably now, thank God. It's past my bedtime too.

Final thoughts for the night: I met the hospital chaplain this afternoon. The poor guy came in knowing very little about Isaac, just that he's a baby in the ICU. He asked me "So, what's going on?" I told him, and he was shocked, speechless for a moment. Then he said "Well, that is...heavy." Heavy. The best word I have heard to describe this whole ordeal. The best word to describe how I feel. Jesus carried his heavy cross, and he was beaten half to death before he even began. He only had one person to help him carry it. Jeremiah and I have all of you, and our thanks will never be enough. Jeremiah and I have Jesus, and that will always be enough."

A friend and co-worker shared the following prayer in response to this update:
An Inspirational Prayer:
"Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace,then. Put aside all anxious thoughts and imaginations, and say continually: "The Lord is my strength and my shield. My heart has trusted in Him and I am helped. He is not only with me but in me, and I in Him."
--St Francis de Sales