The scoop

It's amazing to me that after a week of uncertainty with Caleb's health, and an incredibly difficult trip to the hospital yesterday, I can report that this sunny, blue-skied weather is mirroring my heart today.  It's true, in spite of my crazy life, I'm overflowing with joy today.  Every day this week, Daniel and I have set our alarms to wake up early, before our kids get up, to spend time with God, praying and studying our Bibles.  And because of that time with God, and the prayers of so many people, our spirits have been lifted and we have joy and peace that has nothing to do with our circumstances.  I can't help but share about God's goodness; it's beyond what I even understand!

Our cardiologist called first thing this morning (note to Ingalls' and Atwoods: quick news, just like you asked God for!) and he said that yesterday's test came back clear and good (next answer to prayer).  That's one potential problem crossed off our list.  After we talked a while, Dr. Kumar said what we really need is an accurate reading of Caleb's oxygen level (his "sats"), because it's hard to get a good reading when he's screaming, which he always is now in the doctor's office.  He's also had colds and that can affect the reading.  So since this test came back clear, Dr. Kumar said maybe he's actually fine and the problem is just that we need to see what Caleb's sats are when he doesn't have a cold and isn't crying.  So we are actually in the process of getting one of these machines for our house, so we can monitor Caleb at home, when he's calm and happy.  Dr. Kumar wants us to take several readings over a week or so and see what it shows.

This is potentially great news, but we won't know until we get this machine to our house and see how Caleb does when he's not hysterical.  And trust me, he gets hysterical.  Yesterday was really hard on him, and on me.  He had to be restrained, and he fought the WHOLE TIME.  He reminded us that he's a little fighter.  The kid was not going to give up until they had to just tape him down to the table while they put him in the machine that looks like a cat scan.  It was hard to watch him have to endure all that and have to be the one to physically hold his shoulders down while I just cried and cried and he screamed and screamed.  It was a bit traumatic... but then he passed out in the car immediately on the way home, and woke up singing and smiling and talking to himself in the backseat.  Wish I could have bounced back so quickly!  The whole ordeal completely wore me out!  But it's all towards the goal of helping him be healthy, and I have to tell myself that when he freaks out at the very sight of someone in scrubs, which he does.

Now we wait a bit.  We have to get this machine, which will take a couple days, then we have to see what his oxygen does for a few days... We need your prayers.  We need you to rally around us, remember little Caleb and lift him up to our Father, begging Him for his oxygen to just go right up to where it needs to be.  Thanks for standing with us and not forgetting us.  We feel the effects of your prayers... keep them coming!

Praying for healing!

We just got home from meeting with our small group and I feel refreshed.  Our little group of about 30 or so has come to mean so much to me in the last year; these people know us, care about us, listen to us, and walk with us.  They love me and they love my boys and their prayers make a difference in my heart.  I believe they make a difference to God's heart too... thank you, my friends, for coming around us tonight and speaking life and truth to us.  Community is a powerful thing!


We are taking Caleb to Peyton Manning Children's Hospital tomorrow at 12:30 for tests.  Please pray for him to be calm and feel secure and at ease.  Pray for answers.  Pray for Daniel and me to trust God's plan and goodness.  But please!  Pray for Caleb to be healed and whole!  My brothers and sisters reminded me tonight that we have a Father who wants to care for us and I don't have to resign myself to anything that a doctor says; God can still touch Caleb in a powerful way.  So join us in asking God to do that!  And feel free to text us or email us with an encouragement tomorrow.  We need support and encouragement and are really thankful for it.  


"The LORD is close to all who call on him,
yes, to all who call on him sincerely.


He fulfills the desires of those who fear him;
he hears their cries for help and rescues them."  - Psalm 145: 18-19

Some tears today, his and mine

Disclaimer:  I am super tired and don't feel like writing, but I want people to know how Caleb is doing... so this will be short.  We took Caleb to see his cardiologist for a checkup today.  It wasn't a very good appointment, and not just because Caleb is now scared to death of doctors and nurses and cries when they come near him.  Today, as soon as Dr. Kumar walked in the door, his face was full of concern when he looked at Caleb.  He said, "Wow, he's really blue."  Turns out, Dr. Kumar says something is going on, because his oxygen levels have dropped inexplicably.  We have to go back next week for some tests to determine what needs to be done.  This was discouraging, because I desperately wanted good news today and we started right out of the gate with a concerned doctor.  Then Caleb had an echocardiogram to get some pictures of his heart and they found that his heart function continues to be weak.  Dr. Kumar said if it hasn't gotten stronger at this point, almost 6 months after his last surgery, it's probably not going to improve.  Which means his baseline heart function is below normal and he is at a greater risk for more problems as he gets older.  We might not notice any changes in him for now, but the doctor explained that when Caleb is, say, 10 years old, we can expect some additional issues after that many years of having a weakened heart.  They can't do anything for his weak heart function, but hopefully the additional tests next week will shed some light on why his oxygen level is so low.  I'm not even going to speculate beyond our next step.  I was discouraged, to say the least, but we had made the excellent decision beforehand to go straight to the children's museum after the appointment and spend the day having fun as a family.  And we had fun instead of being bummed.  Jonah and Caleb have the amazing ability to take our minds off our fears.  Please pray for us this week.  We go back on Thursday and I am determined not to be consumed with worry but just go a day at a time.  Your encouragement and prayers would mean the world.    

My One-Year-Old Miracle

One year ago today, at 9:41 a.m., a squishy, pink, screaming little boy with a bum heart came into this world and changed my life forever. Needless to say, it's been emotional reflecting this week on the events happening one whole year ago in this family... yesterday while my kids napped I re-read my whole blog, reading about the day Caleb was born and the crazy days that followed, and each time I read about one of those glorious "ups", and excruciating "downs", fresh tears rolled down my cheeks.  What was perfect was that Caleb woke up while I was reading and I went and held him and just cried and cried and then suddenly burst into laughter because I was totally overwhelmed with joy.  I'm sure it was a very strange way to wake up from a nap, with his mother having an emotional outburst, but in a sweet and perfect way, as if he understand what was happening, he started laughing right along with me and then like a little miracle, Caleb started clapping as if he knew that we had SO MUCH to celebrate and that really that's what his crazy mommy was trying to communicate. It was precious.  I just squeezed him and kept laughing and crying and we sat like there for quite a while until baby boy had had enough already and wanted his bottle, thank you very much.  I think this is the most I've ever laughed and cried at the same time, but there's no other response I can think of that fits better how I feel today.  We have gone through so much in the last year, so much hurt and disappointment and fear and pain... and yet here Caleb is, one year old, growing into a little boy who is sweet and joyful and getting bigger (and more mischievous) every day.  I am bursting at the seams with thankfulness today.  I am so convinced that God is REAL and that He is GOOD... and not just because He has kept Caleb alive, but because He was so obviously with us in those dark days.  He is good because He is present, He's with us, lifting our heads and giving us strength that couldn't have come from anywhere else.  What a day!  What a day to celebrate and laugh and cry and be amazed at this crazy life we've been given!  

Can I ask you a favor?  As if I haven't asked you for more than I can ever thank you for... your prayers, encouragement, and support are greater gifts than you'll ever know... but I have one special request on this special day.  I want Caleb to know how many people have been following his story, how many people have prayed for him and thought of him.  Would you take a moment to write something to him?  Please, whether it's a response on this blog, a message to me on facebook, an email to kakinnaird@hotmail.com, anything you want to say long or short, just take a minute and tell him that you've prayed for him.  I am going to print off all the messages and posts that come in and keep them in the box of things from this year.  Send a message to Caleb and let's overwhelm him with the amount of people who love him!  If you have ever said a prayer for my little boy, please take a moment to let him know that, and when he's older, we can show him your precious messages.  It can be your birthday gift to him. 

Happy Birthday Caleb!  You and your heart are a gift to me more precious than I'll ever be able to tell you.  You have made me a stronger, wiser, more humble woman and I love you more fiercely than you will be able to understand, until hopefully someday God blesses you with your own children.  I am praying for you today, that God gives you many, many birthdays, and that you will not only have a strong heart that keeps amazing us all, but that you will have a spiritual heart that loves God with everything you have.  You have a beautiful story to tell and I pray that God will use your story to help others see Him and His love.  I love you, baby boy.

 

Unconventional crawling techniques

Have you ever seen the end of first Terminator movie, when they're trying to kill the Terminator and he just won't die?  You know how they blow his legs off, but then he just keeps dragging himself around the floor on his elbows?  That's totally what Caleb looks like when he "crawls".  He doesn't really use his legs, just drags his little self around the house like a paraplegic.  It's unconventional, but it thrills me that he is on the move, even if he does look like the "Toominator", as Jonah says.  (He obviously doesn't know who we're talking about.)


We had a chaotically fun Christmas; Daniel and I agreed it was our best ever now that we have two kiddos.  Jonah got his heart's desire, a new combine, and Caleb has eaten probably two total pounds of wrapping paper in the last month.  Gross.  The child wants nothing to do with baby food, but give him a piece of paper and he'll suck that baby down.  Speaking of eating, we've made major progress on that front.  For months, Caleb would barely let us feed him baby food.  The doctor thought he probably had an aversion to having things put in his mouth, which made sense given all the meds he takes and the times he's had to be on a breathing tube in the hospital.  I was afraid he was going to be only drinking formula for the rest of his life!  Then lo and behold he discovered finger foods, and suddenly he's a pig.  He'll eat ANYTHING, as long as he can pick it up himself.  So he's gaining weight and staying chunky.  See evidence below.

Things are pretty calm in the Kinnaird house... relatively speaking.  Two things we are looking forward to in the next month or so are Caleb's first birthday (WOW) on January 27.  This will be a huge celebration for us!  The other thing we are looking forward to is Caleb's next cardiac appointment on February 9.  We are hoping and praying that his overall heart function has improved, because it has been weak since his last surgery.  We are really hopeful for good news.  It would be amazing to have an entire appointment with only positive news.  We haven't had one of those in ages, so pray with us, if you would, that Caleb's heart will grow stronger and stronger in these next few weeks.


I hope you're having a happy new year!  I've got to go break up an altercation involving accidental hair-pulling. :) 

Runny noses and Christmas hysteria

I always thought I loved Christmas, and every year I get super excited when it finally gets here... but my own excitement, I have learned, is NOTHING in comparison to the near-hysteria that Jonah is experiencing as the holidays get closer and closer.  I have never seen the child like this about anything.  The day we put up a simple strand of outdoor lights on our porch, he broke into cheers and applause and literally jumped up and down for several minutes.  And each day is more and more of a frenzy!  I can't imagine what it will be like when he actually wakes up and sees presents under the tree.  Regardless of where you live, if you hear a faint yet distinct fit of joyful screams on Christmas morning, it might be coming from my living room. 


It would wear me out if I wasn't enjoying Jonah's anticipation so much.  My favorite thing he does right now is provide a running Christmas commentary to Caleb throughout the day.  "Look, Cay-wub, look at the lights on that house!"  "Cay-wub, you're probably going to get a tractor for Christmas and I'm probably going to get a combine."  "My stocking is going to be BIG but your stocking is going to be wittle, because you're wittle, Cay-wub."  And so on.  Caleb seems to sense something exciting is going on because he watches his brother with an interest I've never seen before.  Between the two of them, there is no lack of enthusiasm around here.


But even amidst all the fun and excitement, Caleb continues to keep us on our toes.  We never can truly just relax and enjoy life because we're too often reminded of Caleb's special little heart and the impact that little heart has on our daily life.  This week I have already been to the doctor three times and it's only Wednesday.  Caleb has had a very bad cold virus that just won't leave, and he has to be monitored when's sick because the doctors have to look out for breathing struggles, oxygen changes, all that jazz.  We went to the doctor Monday and the doc thought he might have the flu and he might have to stay over night at St. Vincent's.  Yuck.  We went back the next day and she said he looked better and could stay home but we had to keep our eyes open for unusual breathing or anything else out of the ordinary.  A few hours later we had our first genuine scare at home.  When Caleb woke up from his nap his lips were purple and his hands, legs, and feet were ice cold.  And I couldn't warm him up.  I called Daniel, he came home, we called our pediatrician and she said to bring him back... I thought for sure we were heading to the ER at St Vincent's.  But after a couple hours, he started to get pink again and started to finally warm back up.  Our cardiologist and pediatrician agreed he could go home again and it was probably just a reaction to the fever he's had with this virus.  When kids have a fever, their extremities can be a little cold, which for him can mean REALLY cold.  It wasn't until I walked back in our door at home, after spending so much time at the doctor and in near-crisis mode, that I realized how scared I'd been.  Daniel was too.  Even a few hours later when we crashed in bed, we just had to cry off the emotions from the day.  This morning he seems better, still chilly but I can warm him up with lots and lots of layers and a cranked-up furnace.  I think this virus might finally be (please, Lord) going away.


So we are plugging along, trying to make ourselves relax.  Daniel and I had a long talk last night and realized just how distracting it is to have a child with medical issues.  It's really hard to focus on other things, which is especially hard for Daniel with his job.  It's hard for me to focus on the ministry and discipleship that I want to pour energy into, and yet so often I don't even have any energy to put anywhere else because my family gets all of it.  It's hard, but we're trying to learn how to have a life AND a heart baby.


All of this is not putting a damper on our Christmas.  We are all having a blast with this season and continue to just enjoy simple things together.  Thanks for your ongoing prayers and encouragement, and especially for your understanding.  We hope the people we love can understand how our minds are pretty consumed with family stuff... and pray for us to continue to find our strength and security in Jesus!

An update... and some cute pictures while we're at it

Happy November, friends.  It seems like a good time to share a Caleb update with y'all.  We had a cardiology check-up yesterday back at good old St. Vincent's and it went pretty well.  (Insert sigh of relief.)  Caleb has finally put some weight back on and is at a healthy, normal weight for his age.  If you've seen his fat little face lately, you are probably not surprised to hear this.  The kid has several chins!  Overall, Caleb is doing well.  If you've followed along with his progress, you may remember that we found out a month ago that his overall heart function has weakened since surgery, and this is not a good thing.  Yesterday we found out his heart has gotten stronger, but is still not within the range of normal heart function.  It's just not pumping as hard as it should.  However, Dr. Kumar is still hopeful that Caleb will get there with more time.  He reminded me that doctors look at a patient's overall health more than one isolated factor, and if you look at Caleb, you see a 9-month-old little boy who is growing, eating, breathing normally, has good oxygen levels... basically, he's doing great for his condition.  And that's encouraging.  


Life goes on, doesn't it?  My boys are growing and changing and it seems pointless to waste time worrying about what the future might hold, when the present is flying by.  Jonah just turned 3 and had a John Deere-themed birthday party that was, I believe, the highlight of his life.  He is obsessed with all things related to tractors.  He plays with this little John Deere toy phone that he insists on keeping in his pocket "in case a farmer calls".  Sometimes, apparently, farmers DO call, because I hear him talking on it and the conversation always ends with, "OK, bye bye Farmer, I wuv you."   


So my little guys are both doing well.  Sometimes I look at them and I can't believe how old they are and how fast this all goes.  I would love to hit pause and just stay in this stage where Jonah still wants me to tickle his back and Caleb smiles up at me with his gap-toothed grin about a hundred times a day...God love him, he's going to have a Cox smile.  These boys are the best and I love being their mama.