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

Archives: 6/17/2014 Gratitude

From 6/17/2014

This has been one hell of a week. Last Tuesday we came here to deal with pneumonia and low muscle tone. Today we are dealing with new teams of doctors, neuromuscular teams, nutritionists, social workers, palliative care, equipment, stress, fear, sadness. But in the midst of this, mixed into every moment, I feel such gratitude. I will try to express that here, but I know I will fall short.
I am grateful for:
Jeremiah, every moment, for saving Isaac's life last week, for being my rock, for sharing my pain.
My mother, for being here. For everything.
My mother in law, for taking such good care of Natalie.
Pam and Neal, for being here, for being chauffeurs, for caring.
My sisters, for their love from afar, the prayers, the pictures, the monsters :)
Katie, for her love, for the amazing pictures she took of our family this spring.
My brother Dan, for Cookie Monster, for being a shoulder to cry on, something I've never done before.
For Juli, for organizing, praying, delivering, fighting, loving, being.
For my co-workers, for the food, snacks, gift cards, prayers, support, cash. You are amazing.
For our church, Guardian Angels, Father Alan, and the Knights of Columbus, for the prayers, meals, yard work, and gas money.
For Uncle Greg, Isaac Gregory's namesake, for saying that he would give his life for Isaac's if he could, and meaning it.
For Brian, our best man, for the Fathers Day feast.
For Renee, for being the best neighbor, for letting Natalie play.
For all of the staff in the PICU, for your intentional kindness, knowledge, and love of your work. For calling Isaac "nugget, tator tot, bub" and other such sweet things.
For all of the prayers, for your belief in the power of prayer, for hope.
For God's grace.
Thank you.

Archives: 6/16/2014 The Good, The Bad, and the Ugly

From 6/16/2014:

The good news is that Isaac has tolerated two sessions off the bi-pap machine today.
The bad news is that we received the results of the genetic test earlier than expected, and Isaac is positive for SMA, Type 1.
The ugly, heart-breaking, unbelievable...Isaac's muscles will continue to atrophy until he passes away. We have a few more months with him, maybe a year. The doctors say he is on the weaker end of Type 1, which is the most severe.

Next up, we get him ready to come home. We learn how to insert his feeding tube, run the bi-pap, use the cough assist, and we love him like crazy. We figure out how I balance work and spending as much time as possible with my son before he goes on to be with The Lord. And we pray constantly for a miracle.

During a break from the bi-pap machine 

Those fingers still tasted pretty good even with that mask in the way...

Archives: 6/16/2014

After almost a week in the hospital, I posted this to CarePages.  6/16/2014

"Isaac is still in the PICU, and he will be until he is able to tolerate longer periods off the bi-pap machine. The machine basically helps his lung inflate and deflate as he takes his normal breaths. His muscle tone is so low that he isn't able to recruit his respiratory muscles very effectively. He managed two sessions off the machine yesterday, 30 minutes and 45 minutes, and we are so proud of the little guy! It's such hard work for him, and he is a trooper. He keeps smiling at us, and loves interacting with all of our visitors. We should get the results of the genetic test tomorrow or Wednesday, and we are still praying for a miracle. God can do anything, and we pray that His will be done.

We are so grateful to everyone for their spiritual, emotional, physical,and financial support. Feel free to send a private message for our mailing, physical, or email address, or phone number.

Thank you, and keep on praying. My special request is that everyone pray a Rosary today, with the intention that Isaac does not have SMA."

Archives: 6/15/2014

I am finally getting around to posting all of the archives from the CarePages site that we started almost a year and a half ago.  Isaac had been hospitalized for just a few days, and I asked my oldest sister to get the CarePages up and running.  We have maintained updates about Isaac and our family on an off since then.  I will post each update titled "Archives:__/__/____"

From June 15th, posted by my sister, Amy:

"Just before his four month birthday, Isaac had an unresponsive episode after aspirating his saliva. His daddy saved his life and Jenna and Jeremiah brought him to Children's Hospital at the urging of their pediatrician. Currently they are working to stabilize him and to find the cause of his low muscle tone, which Isaac has had since birth. The pulmonology, genetics, and neuromuscular teams all
agree that Isaac likely has Spinal Muscular Atrophy Type 1 (SMA 1). We are waiting for the resultsof genetic testing to know for sure. If it is SMA, Isaac will continue to get weaker until he eventually passes on. Jenna and Jeremiah have been given one year, maybe two, to love and enjoy their sweet boy. Please continue to pray for Isaac, his parents and family. Pray for a miracle of complete healing. Offer up little daily sacrifices in Isaac's name such as skipping a coffee or dessert. Pass on this prayer request to anyone and everyone. Isaac is a gentle soul, full of smiles, love, patience and courage. He is named for Isaac, the son of Abraham. Abraham was asked to sacrifice his son, but was spared at the last moment. Our hope is that God will spare Jenna and Jeremiah the loss of their son.."

A Long Time Coming, Part 2

Our story continues...still on September 16th, the day Isaac was last admitted to the hospital.

When Jeremiah arrived at the hospital with my dad, he was a wreck.  Still recovering from his concussion, the day's events had been even harder on him than I think they would have otherwise.  Fear, adrenaline, and exhaustion are bad enough- top it off with a concussion headache and worsened insomnia, and he was in a bad place. Jeremiah's first concern was Isaac's brain.  His oxygen had been so low for so long, but I assured him that he had been watching me, tracking, and trying to be his good-natured self despite everything.  Isaac eventually calmed down enough to get some rest, and Jeremiah and my dad headed home.  After 3 nights in the PICU, we transferred up to the 9th floor.  Because those rooms are quieter and darker (and therefore somewhat friendlier to the concussion minded), Jeremiah agreed to stay with Isaac so I could go home.

I came home to our sweet Natalie, who only wanted to cuddle with me and hold my hand everywhere I went in the house.  We snuggled up on the couch to watch Cinderella (the new Disney movie, and it's as great as you can imagine.  I hope I always remember the look on Natalie's face when she realized Cinderella was on her way to the ball.), and after she was asleep I stayed up late eating Doritos and watching Friends.  I knew I should just go to sleep, but those amazing co-workers of mine had dropped off a kitchen full of snacks, and after all these years I can't resist that cool ranch flavor.  The next morning, I took Natalie to the Knights of Columbus pancake breakfast before Mass. I talked to Jeremiah, who said the night had gone well with Isaac, and he was okay with staying another night with him. Natalie and I would come down for the afternoon, and that night I would come home, avoid the chips and Netflix, and get some real sleep.

When we arrived at Isaac's room, there were many more people there than there should have been.  A doctor or someone assured me that everything was fine.  I brought Natalie in and sat her on the couch, looking to Jeremiah.  He also assured me that Isaac was fine now, he had just had a treatment and was having a hard time calming down and getting his saturation back to normal.  After a long while, it was apparent that Isaac was not recovering.  We had him on 100% oxygen (about 15 liters), he was exhausted but could not sleep, the acetaminophen wasn't helping him, his heart rate was sky high again, and he was whimpering and crying and grimacing.  Nothing could console him, though he obviously wanted to be consoled.  At one point I was talking to him, telling him that his sister was here.  Mid-cry, he paused to open his eyes and look for her.  He saw her, took a breath, and then couldn't hold back the tears anymore.  Jeremiah and I talked, and we agreed that we would both stay with Isaac that night.  I called my parents, who were a few hours away, and asked if they could come get Natalie, explaining that Isaac was having a really rough afternoon. We called our priest, and asked if he could come the next day to anoint Isaac. We honestly felt that this was probably the beginning of the end.  We were waiting for his next breathing treatment, thinking it would either help him or make it all worse.  If it make it worse, we talked to the doctor about not intubating Isaac.  We wanted to be able to take him home.  After my parents left with Natalie, Jeremiah and I said our goodbyes.  We took our last pictures, we talked to Isaac about all of the amazing things we have gotten to do together, I told him about the day he was born.  We told him it was okay to go, if he was ready.   He calmed down enough in the dark room, with no sounds but our voices, to finally fall into a restless sleep.  When the respiratory therapist arrived to help with his treatment, the nurse and doctor came along too.  Jeremiah and I took over, wanting to be the ones with our hands on our son.  Clenched jaws, clenched stomachs, steady hands, reassuring voices.  He made it through the treatment, it went so smoothly. We changed out his mask, gave him yet more fluids, more tylenol, and he fell asleep. This time he slept soundly, with me curled up on the end of his bed and Jeremiah asleep on the couch.

At 7:30 in the morning, Isaac woke up smiling. Bright eyes, happy coos. He wanted to watch his mobile. He wanted to read stories, he laughed, he was a completely different version of himself than 9 hours earlier.  Jeremiah and I breathed very tentative sighs of relief, still exhausted from the day and night before.  Isaac took a long nap that afternoon, just before our priest arrived.  We talked to him about funeral homes, cemeteries, and where to hold the funeral.  Not because we still thought Isaac was going to die at any moment, but because we know that his time could come soon, and this was a conversation we had avoided long enough. Father Alan anointed Isaac as he slept peacefully, and Jeremiah and I left for a care conference.  At the meeting, we talked to Isaac's pulmonologist, Oren (he asked that we call him that, but that his daughter's friends still have to call him Dr. Kupfer:) about our wishes for Isaac in light of all the recent events.  We decided to finally look into hospice, knowing that there isn't much that the hospital can do for Isaac that we can't do at home.  We have had enough experience with these scary events to know what to expect from Isaac as he recovers, and for the most part we don't need blood gas levels and IVs and chest x-rays and blood pressure checks every 60 minutes or any of those other things that have been valuable for Isaac but are now just another source of anxiety.  We have had truly amazing experiences at Children's Hospital, but we still don't want to be there.

 Last summer, when we first brought Isaac home after his 4 week hospital stay and diagnosis with SMA, we just wanted him home.  We weren't thinking much about nursing or hospice or anything.  After his second hospital stay last September, we decided to pursue more nursing help than we had over the summer.  We now have private duty nursing 5 days a week, and thank God most of Isaac's scary episodes have occurred with one of them around.  With the support we have from our families, nurses, and friends, we can handle Isaac's medical needs at home, where we can also provide his emotional, physical, and spiritual needs. It may sound funny to talk about spiritual needs for a 19 month old, but I tell you- Isaac's favorite hour of the week is the hour we are at Mass, with him in the very front row.  He laughs the greatest, loudest, most joyous laugh when Father walks over to bless him before communion.  He knows he is close to home, and he loves it.  After meeting with the hospice nurse, we learned that we can't continue to have private duty nursing and hospice care at the same time.  We were disappointed, because we were looking forward to the available 24/7 support of a hospice nurse, someone who we could call at any hour to come be with us when Isaac goes, someone who can sympathize with our grief but not feel it as acutely as a family member would, someone who has helped families through those steps.  Instead, we are using palliative care, which means a nurse will stop by 1-2 times a month to check on us, and will be available for phone consultations if we are deciding what to do for Isaac.  Another resource, even if it isn't exactly what we were aiming for.  Really, it doesn't matter.  We have no idea how the end will be.  We pray it will be quiet and peaceful and at home, but it could be quiet and peaceful and at the hospital. It could be something we see coming for days, for hours, or just moments.  It could be in his sleep, during a treatment, in the car.  We just don't know, and that,  I suppose, is why it's okay that we don't have hospice in place.

After the care conference, Jeremiah and my parents went home.  Isaac woke up feeling great after his long nap, and he and I spent the next three hours just playing.  Cars, blocks, dance party, dinosaurs. He laughed more that evening than I had heard in weeks combined, and I went to sleep forever grateful for those hours. We took Isaac home the next afternoon, still reeling from the emotional rollercoaster of the past days.  We have been home now for a week and a half, and Isaac is still doing great.  He has his ups and downs, easier treatments and harder treatments, generally uneventful days and moments that get us all shaken up again.  He has started to get startled more often, more anxious, and I have heard him cry out in fear at least ten times in the past three days, which is unlike him.  But he also spent most of yesterday talking and cooing, and after an afternoon of watching cartoons today, he laughed his adorable little "heh, heh, heh" all evening.  Now more than ever before, we are taking this one day at a time.  I didn't know it was possible to live in the moment more than we had been, but lo and behold we are managing it.

We have so many people to thank for their support and generosity, I really don't know if I can do it.  I honestly lose track.  But I will take a moment to thank the residents of Life Care, where I work when I can.  They held a bake sale the other day, which I think they do once a year.  During the planning stages, the residents decided to donate the proceeds from the sale to our family.  I was so surprised when my friend Juli stopped by to drop off the proceeds, because I didn't know about the event.  I was so touched by the gesture, by the love of those wonderful people that I get to see now and again.
Thank you to everyone for your prayers, your love, your friendship.  We couldn't do this without you.

A Long Time Coming, Part 1

Well, friends, I have been thinking about this post for over a week.  I wanted to share with everyone what was going on, but I also needed some time to think about all of this privately, and then to rehash the past few weeks with Jeremiah.  Tonight I feel like I can talk about this without crying, but you won't really know if I do.

The morning after my last post, I took Natalie to a song and story time at our town hall.  She had so much fun, and was a good sport about going straight home afterward.  We had to walk through the town park to get home, but I promised her that we would go home, do Isaac's treatment, and then we could all come back to the park.  Isaac had woken up before we left, but I had asked Jeremiah and our nurse to wait until we returned to do his breathing treatment.  Our nurse had him all ready for the treatment when we got back.  I walked past his crib to go wash my hands, and stopped to smile at him.  He grinned back with his bright blue eyes, as sweet and happy as can be.  I had picked out a bright blue t-shirt with a tricycle on it, and it looked so great on him.  He was definitely in the best spirits since his most recent hospitalization, and I couldn't wait to get him in his stroller and out to enjoy some fresh air and sunlight.

Natalie played with some toys while Jeremiah, our nurse Jessica, and I all geared up for Isaac's treatment.  I decided we should do a little nasal suctioning before doing his coughs- something we had always done until the last couple of days.  Isaac's nose had been bleeding a little due to all of the extra treatments and dry air, so we had been going easy on him.  Ugh, my heart is starting to race just thinking about what happened next.  I suctioned his nose, we started his cough assist (a reminder, this is a machine that forces a set volume of air into Isaac's lungs, then forces out a larger volume of air to mimic a cough).  With the first exhale, blood came spurting out of Isaac's nose.  The next several moments were a flurry of trying to suction blood from his nose and mouth, trying more coughs to get him to breath, trying the 'inhale' setting to force air and oxygen into his lungs.  Isaac's oxygen saturation dropped very quickly, down to 80%, 70%, 50%, and lower.  Our nurse, God bless her, calmly told Jeremiah that she needed him to call 911.  I grew semi-hysterical when I saw Isaac's face covered in blood, and I tried to wipe it off in between suctioning and coughing and breathing.  My first thought, and a recurring thought was once again "not like this, Lord, please not like this."  Please don't let our son die with his face covered in blood.  Jessica continued to calmly and firmly count the breaths she was giving Isaac, to help direct us, and to keep us as calm as possible.  I switched suction catheters, switched cough assist settings, and tried to keep up with the blood.  All the while, Isaac's oxygen levels kept dropping, 40%, 30%, back to 40%.  But his heart, his heart kept beating. And from underneath the noise of the suction and the cough assist, I could hear Isaac's occasional cries.  He was still breathing on his own, able to use his breath to trigger the cough assist.  But he turned blue, and then grey, and then white. Natalie climbed up on the chair next to our crib.  "Mommy, is Isaac sick again?"  Yes, sweetie. We kept talking to Isaac, telling him we were here and to keep fighting, that we could hear him crying, that we knew he was trying, that we were trying to help.  Mommy is here, Daddy is here.  "And sister is here, too," she piped in from her perch. The EMTs arrived, a different team than responded in July, so Jeremiah quickly oriented them to Isaac and his equipment.  Someone took over for Jessica holding the cough assist.  I called our neighbor, Virg, who came to take Natalie to her house.  Natalie knew the drill. The EMTs cut off Isaac's new blue t-shirt, they wanted to start an IV, we told them it wasn't worth their time, so they asked our permission to do an IO.  Our other nurse, Ele, had just been explaining those to me two days prior.  It's when they drill into the bone in order to place an IV.  We gave the go ahead, and out came the little drill.  Piece of cake.  I heard an EMT say that we didn't have time to get Isaac to Children's Hospital. I remember saying "I'm sorry, but that is the only place we will let you take him.  Get a helicopter if you have to."  Later I thought how silly it was that I started with "I'm sorry."  We started to get Isaac ready to transfer to the gurney, his oxygen was still barely 50% going on about 12 minutes now.  As soon as he was on the gurney and exactly halfway out the door, I saw his oxygen shoot back up to 91%.  I shouted to Isaac that he was amazing, I shouted to Jeremiah that it was up in the 90s.  It was a towel under his shoulder blades that had done it.  At that moment I felt calm, and I knew he was going to make it- at least for now.  Jeremiah and I ran partway down the street as the ambulance took Isaac one block away, to the baseball field at the elementary school.  I remember pausing in the street, not knowing if I should stay by the ambulance or run to the end of the road and meet it there.  In the end, I ran down, talked to Jessica about leaving right away for Children's so Isaac wouldn't be alone in the ER for very long, stopped to tell Virg what was happening, and running back to the house to gather a backpack of essentials.  I wanted Jeremiah to ride with me, thinking that the helicopter would be taking off any second.  But he was in the ambulance with Isaac, and I didn't know what was going on, so I just drove.

I ended up arriving at the hospital a full 30 minutes before Isaac did, and it's a 45 minute drive from our house (or maybe a 37 minute drive that day...).  The security guard in the emergency department was worried that I had come to the wrong hospital, or that the helicopter took Isaac somewhere else.  I frantically called Jeremiah, who explained that the chopper had just left and would be about 20 minutes.  Later, going over the events, Jeremiah told me that he and the EMTs spent another 20 minutes in the ambulance trying to get Isaac stable enough to fly.  His oxygen stayed up as long as someone was using the inhale setting on the cough assist.  This was a brand new setting for Isaac, one that Jeremiah had thought up about a week prior, and set up with the help of our pulmonologist the day before our last hospital discharge.  It basically turned his cough assist into an ambu bag, but one that no one has to squeeze over and over or worry about pressures.  That setting is what was keeping Isaac alive for at least 45 minutes, and thank God the battery held its charge.  I met Isaac in his room, and the nurse who led me to him assured me that he was stable, that he was doing fine.  I rushed to him, to reassure him, to kiss him, and to reassure myself. He was so mad, and scared, and looked just awful and exhausted.  The respiratory therapists were struggling to find a mask and headgear to fit him (Isaac's had been left at home, attached to his ventilator).  The third one they tried at least gave him a decent seal, but the headgear cut into his cheeks and the mask all but covered his top lip.  It looked incredibly uncomfortably, but at least he was breathing.  I reviewed the ventilator settings with the therapist so he would be on the correct mode (Passive PC AVAPs, tidal volume 160 cmH2O, EPAP 8, IPAP min and max of 32/20, increased due to respiratory distress, with a backup rate of 14, in case you were wondering). While we waited to transfer, I recited the Gruffalo.  Isaac locked his eyes on me, trying to block out everything else.  He even made a happy sound when he heard the voice of a nurse that he liked, and he looked around for her.  That was about as good as it got- the moment anyone else came near him he was all tears and crying again.  I don't blame him.  I can guarantee I have never felt as awful as he must have felt that day.

We transferred up to the PICU pretty quickly.  His CO2 levels were very high, but his chest x-ray still looked pretty good.  An amazing nurse named James Brown managed to place an IV, because the IO in his bone had come loose.  We were worried that it could have broken his leg, so they ordered an x-ray (it didn't break).  The medical team knew us and Isaac, and no one tried to tell me he would have to be NPO.  They ordered the right dextrose, they special ordered his formula, they notified his team, they gave him Tylenol without me having to ask for it.  They were so great. Within hours, Isaac's CO2 was coming back to normal, we had weaned him down to 3 liters from 15 liters of oxygen, and he was getting his formula along with extra fluids.  We talked with the pulmonary and respiratory team to come up with a plan.  How do we keep Isaac's airway and lungs clear without irritating his nasal passages and starting another bleed?  We took it one step at a time, one treatment at a time.  First step, let him sleep.

Home Again

Last Wednesday, Isaac was admitted to Children's Hospital Colorado with rhinovirus and a partially collapsed lung due to aspiration. We don't know when he aspirated, perhaps a few days before when he had a mucous plug at a fundraiser up in Black Hawk (worth it's own blog post, by the way!), or perhaps he aspirated when he threw up on Tuesday morning for no apparent reason.  Whatever the cause, it was enough to make him the angriest most awful feeling Isaac I have ever seen.  He was stable, but sick, and it would have gone downhill fast.  I'm glad we got him to the ED, got a chest x-ray, and determined that he wouldn't need antibiotics or an IV.  That last part is crucial because they tried for over 45 minutes to place a port to draw blood, then another 45 minutes in the middle of the night trying to draw more blood.  It turns out that if you want to draw blood from Isaac, a heel poke better be good enough.  With no real muscle to speak of, his veins kind of float in his body, needles be damned.  Isaac and I stayed 3 nights there, with Jeremiah, Natalie, and my parents visiting in the afternoons. Jeremiah and I usually have a routine for hospital stays- we switch off nights and spend a few hours together at the hospital while a grandparent or two stays with Natalie.  This time around, Jeremiah was in no shape to be staying in a hospital room.  Four weeks ago, we were rear-ended in our minivan.  It didn't seem like it should be too bad, except Jeremiah suffered whiplash and a concussion...a concussion from which he is still recovering.  People, those things are no joke.  At the hospital, I had to repeat Isaac's room number at least 4 times over 2 hours for Jeremiah to remember it.   His doctor ordered no driving, no sleeping in the same room as Isaac and his loud, bright, machines, no stimulation, and immediate vacating of an area with too much stimulation.  So the hospital was just awesome for him.   Anyway...we are home from the hospital now, but Isaac is still sick. He is requiring twice as much oxygen as he used to, twice as many breathing treatments, additional fluids, lots of tylenol, and about 8 hours a day of television.  Tonight, however, he laughed as Jeremiah and Natalie played peek-a-boo with him, and giggled when I kissed his arms and toes. Some of you can imagine the immense feeling of relief when he began responding to us more like his normal, happy self.  I have cried many tears this past week, stress, fear, sadness, anxiety.  After we brought him home, I was afraid he wouldn't live through the weekend. That isn't an exaggeration.  Colds are often the cause of death for a child with SMA.  But Isaac is a fighter. I pray that he heals from this virus entirely, and soon. How about a miracle? How about tomorrow? How about he wakes up with no cold, and no SMA? 

While I was in the hospital last Friday, September 11, I posted the following on Facebook.  My sister suggested I share it here as well:

"Today I am celebrating 19 months with our amazing, sweet Isaac, while being surrounded by Facebook posts from other parents who are home or in another hospital struggling with keeping their sweet ones with SMA well and alive, more posts about the memories of all of the people who lost their lives on 9/11, more posts about the tragedy of lives lost to abortion. Here at the hospital I am surrounded by other haggard and worried looking parents, sharing glances of sympathy on the elevator, half smiles that say "I know how you feel." I saw a young girl explaining her chemo pump to her mom, another girl crying in pain and sadness as she walked with her mom and brother, pushing an IV pole and carrying her catheter bag, babies in special strollers, feeding pumps and oxygen and bi-pap machines and extremely brave families everywhere. Life is such an incredible miracle, a beautiful gift, and every person has his or her place in this world. All of the war and persecution and murder and terrorism and hatred cannot change that life deserves a chance, that people are precious, or that every soul is loved by someone."

That same night, one of the families I was referring to lost their little girl, Auni, because her body was unable to fight off a cold.  She was two months older than Isaac.  She passed away peacefully in her mother's arms.  This is my prayer, my most honest hope: when Isaac has to die, that he be in our arms, peaceful, surrounded by our hugs and kisses and caresses.  The night after we got home, Jeremiah and I talked about how we feel like Isaac's time is coming.  Maybe not this week, maybe not this month, but soon.  We talked about our wishes for funeral plans-something we hardly spoke of even at Isaac's diagnosis.  Isaac needs your prayers to be healed of this cold, and kept safe from any more colds or flu.  Jeremiah especially needs prayers for healing.  This concussion is keeping him from being able to play with Isaac on his eye gaze, to even sit holding his hand while they watch cartoons.  If he tries for even a few minutes, he starts to get a headache- a sign that his brain is overstimulated.  It isn't fair, because time is being taken away from Jeremiah to spend with our children.  

Please pray for us, for our families who go beyond expectations to take care of us, for our friends who do the same, for Natalie who has started pre-school and dance class and has started wanting 'a big person' to snuggle with as she falls asleep. With that plea I will hit 'publish' and pray that we all get some sleep.

The Last Shot!

This here is a blatant request that any and everybody come to Roy's Last Shot in Black Hawk for a fundraiser for Isaac!  Roy is an awesome, generous man, and his restaurant is the best place for a meal on the Peak to Peak, if you ask me.  He offered to organize a fundraiser, and it is shaping up to be a good sized event.  You may know that I quit my job last summer, about a month after Isaac was diagnosed, in order to stay home and take care of him.  I still work a few shifts a month as a speech therapist, when the need for help at work and the necessary private duty nurses at home happily coincide.  Jeremiah has been a stay at home dad since Natalie was born.  He works construction and bicycle building jobs on the side to help bring in some income, often in the middle of the night when the rest of us are asleep.  We have incredibly generous friends and family who have consistently helped us with some of our expenses, but without a full-time income we are flat out struggling.  Roy stepped in at the exact moment that the money raised via GoFundMe was dwindling, and we plan to express our gratitude in person at the fundraiser!  So if you're looking for a beautiful drive on the Peak to Peak this labor day weekend, come on over, get some grub, and admire the truly impressive collection of shot glasses.   Hope to see you there!

Silence and Fortune

The smoky yellow moon, the crickets, the cooler air, the end of August.  The gasp of relief at the quiet after finally pressing 'off' on the air conditioner.  My children sleeping in the rooms on either side of where I sit in the living room, my husband resting upstairs as he recovers from his concussion. With Isaac's machines there is always a hum, never silence.  Those sounds mean life, those machines help us ward off the inevitable, and one day- miracle aside- a machine will signal death.  I sleep at night to the sound of my son breathing.  Not to quiet, sweet snores, but his shallow inhalations, forced deeper to a set volume by his bi-pap. Sometimes I can't hear him cry over the sounds of his machines, but I know how fast his heart is beating with a glance at the pulse oximeter on the dresser.  I know by his heart rate if I am hearing things, if he is just whimpering in his dreams, or if he is uncomfortable and needs me to roll him over to sleep on his other side, his other ear, his other lung.  When his oxygen level is sitting lower than usual, I know if he needs more oxygen, if he needs me to suction his saliva from his throat, if he needs his head turned, his body turned, or if there is too much air leaking from the mask that he wears 24/7.  When I hear his feeding pump beep, I know if I need to add more formula to the bag or if there is a kink in the tube.  This is the night music, the sounds of our lives, this is what I know.  As I fall asleep, I thank God for the good fortune of having another day with our son, for the constant whir that means Isaac is alive.

When I was in college, studying in Costa Rica, I was assigned to complete my research in two small towns, El Silencio and La Fortuna.  Silence and Fortune.  One of my dad's co-workers had lent me a laptop so that I could type up my interviews (and yes kids, it was this century).  I was determined to turn my interviews and travel journal into a book or article, or short story, because Silence and Fortune was just an awesome title. I never wrote that book- I spent more time dancing the cumbia than taking notes, and I was so in love with El Silencio that I never went to La Fortuna.  All silence and love, no fortune.  I did not imagine that I would finally use my perfect title for a humble blog post (I don't think blogs even existed then). I did not know then that there was a disorder called Spinal Muscular Atrophy, that I was a carrier for SMA, that I would marry a man who was also a carrier, or that we would have a son who would inherit from us a fatal disorder.  I can still picture myself in my dark, airy bedroom in San Jose, seated at the small desk with a boxy laptop open in front of me, waiting for my ride to El Silencio.  I had no idea what to expect, I just knew I wanted to write about it. Twelve years have passed, and today I finally type those words for others to read.  Here, seated in my dark living room, windows open to the cool, night air, I won't try to imagine what life will be in another twelve years or twelve days.  Tonight, I welcome September.  I welcome what is to come.  The relative air-conditioner free silence. The relative I-have-my-family-for-tonight fortune.   And I want to write about it.

Welcome to ROAR!

Thank you for checking out our new blog, Roar with Isaac!  I decided to start a blog as a way to keep family and friends updated on Isaac's progress.  We will continue to update on Carepages.com, but a blog is a more streamlined way to invite new people to follow along.  I will begin to link our earlier updates to make Roar with Isaac a comprehensive place to read about our journey.

Isaac was diagnosed with Spinal Muscular Atrophy, Type 1, in June of 2014, at four months old. While we knew that Isaac had low muscle tone, we never suspected such a serious diagnosis. We were shocked, sidelined, crushed, devastated.  Since his diagnosis, Isaac has been home with us.  We have been told that his time is short, and he has already defied the odds.  He relies on a ventilator, a feeding tube, and  24 hour care to survive.  But at 18 months old, Isaac is thriving. He is bright, happy, and growing.  He is learning to use a speech generating eye gaze device to communicate.  He loves swinging, playing cars, watching movies, reading stories, and watching his sister sing and dance. We are grateful for every moment with our sweet little guy who fights like a lion every day.

Please stay in touch, as I will continue to post updates new and old. In the meantime, here is a link to all of our previous updates at GoFundMe.

Thanks!
Jenna