10 months old

I'm finally getting a post done that I've started and stopped for fourteen days now to celebrate Caleb turning 10 months old!  It's wild and crazy in the best of ways at our house.  Lots of homework, laundry, thawing out meals that friends made (we froze the leftovers of over the past months- Thank goodness- or we'd be eating cereal every night!), chasing kiddos in and outside, and then throw in the all consuming meds, feeds, therapies, doc appointments... & all else that Caleb throws in!  Whew!  He's a full time one on one-24 hour a day job in himself.  We were in the ED on his 10 month birthday, but thankfully, we were discharged and didn't have to stay.  They never could determine a cause of his throwing up so much after the one feed.  These are our reminders of his sensitivity.  But thankfully, he tolerated his feeds and meds throughout the rest of the day.
 He is working so hard in his therapies and we generalize the skills throughout every day.  He finally started rolling from his tummy to his back two weeks ago and has that officially mastered now.  He has rolled from back to tummy a few times (which we were ecstatic about), but doesn't do it consistently yet- and he has to be very motivated by favorite toys or siblings laying next to him practically rolling themselves to encourage him.  His neck control has greatly improved.  His head is just so heavy on his neck that it wears him out quickly to hold it up for long.  He is very close to sitting up by himself for just a few seconds.  We are so proud if the strides he's making in feeding therapy.  He is actually tolerating mouth stimulation via a z vibe (to "wake his mouth up and give him the input pressure he needs) and my finger to stretch his cheek pads which have built up fat tissue.  We are slowly lessening his overnight feeds.  He now takes in (via the feeding pump) 4 bolus feeds during the day and one overnight continuous feeds at a slower rate. Our goal is to eventually get his feeds more age appropriate as well as to encourage hunger (which he has never shown!).  He has begun to tolerate a little baby food.  We've introduced sweet potatoes and oatmeal. He doesn't love either, but doesn't completely despise it either.  He does shake his head no and clinches his lips tight.  I think this is a response of just not knowing what to do with it, once I get it in his mouth.  It just falls out his mouth.  We have to do a lot of encouragement ( singing to pry open his mouth and also as we model swallowing.  We sing, "Ah, ah, ah..." And "who's that tapping at baby's mouth?  It's, mommy, it's mommy!").  We have found one thing he loves!  Ritz crackers (crushed).  We are hoping to find more he can tolerate that he likes, as well.

His head is healing nicely.  The last of the glue finally just came off this week!  It was super thick.  His hair is starting to grow some on that side. 

We treasure every smile, snuggle, and improvement and give him lots of hugs and kisses with extra sanitized hands!!

The boys are ready for baseball season  to start up.  Practices have recently begun.  When they aren't tossing the baseball back and forth, their new favorite backyard activity is lacrosse.  They are quickly learning the skills of how to toss and catch and love getting to hit at each other to try and knock the ball out!  It's both fun and scary to watch!

Kate's dance is going strong.  She's gearing up for performances and working on school projects, memorizing passages, &  studying for many tests,  at the same time.  

Working hard holding his head up, playing with a toy, in occupational therapy.

Enjoying a beautiful day outside and watching the boys play lacrosse.

His head is healing nicely!

Ecstatic to see signs of warm weather! 

In the ED

Little man thought he'd gone too long from the hospital, so we are back in the ED.  He couldn't tolerate his feeds this morning.  Praying he may actually get discharged, if he makes it through this feed.  When we got here, he was all smiles and silly!

CHD Week

The month of February is connected to Valentine's Day, however we also use the month to bring awareness to Heart Disease and in particular, for the next week, we celebrate Congenital Heart Defect Awareness Week.  1 in 100 children will be born with a CHD.  2 of 5 of our children were born with a CHD.  We want to bring awareness to the world to encourage more research, new treatments, and cures!  Through the grace of God, his plan for our children's lives, and the advancement in medical science and technology, these kiddos are not only living longer, but thriving.  I get so excited to read about the advancements that are being made, that my sons will likely need and benefit from one day.  We want to use this week to honor our miracles, thanking and giving praise to God, for our happy moments but also embracing our struggles.  When I look at my heart babies and see their daily triumphs of just being alive, I know what love is.  Love is doing whatever it takes for another.  I want to go beyond Valentine's Day, beyond Heart Month, and see funding, progress, advancements, so that my children live the fullest of lives, sharing their amazing stories, spreading Jesus' word, and one day to have the ability to help others in the same way we can help them.

When I look down at the face of my precious boy, seeing the progress he is making in therapy, interacting with his siblings, and starting to feel like our "new home routine" is normal, I am constantly reminded that he is a medical miracle.  He finally rolled from his tummy to his back for the first time this week!  We are thrilled and, of course, make a huge deal cheering him on.  He is still working on rolling onto his tummy, but still just can't pull his big noggin up.  His head strength has come a tremendous way.  He is holding it up for a longer period (almost a couple of minutes at a time). He is still not wanting to use his left hand as often, so we continue to encourage that.  We are working hard on the feeding and tolerating anything in his mouth.  We just introduced a Z-Vibe to "wake up his mouth" as well as give him the stimulus that he needs.  He has learned to clinch his mouth closed and even shake his head no!!!  The kids think it is hilarious.  He had a neuro appointment last week.  They aren't making any changes.  I was hoping to reduce some of his seizure meds; however, he explained that with epilepsy, the longer we can keep him from having seizures, the better outlook.  So for now, we continue with the successful regimen that he's on.  He'll have an EEG in March.

So, as I wrap up, please help spread awareness of CHD.  Although (with the help of my faith in God) I choose to live hopefully, the uncertainty of my child's future is a realistic nightmare.  We cannot cure CHD, however, we fight it off with procedures, medicines, and treatments, living heartbeat to heartbeat.
                                  Our Heart Warriors

9 Months Old!

Caleb was 9 months old yesterday!!  He's getting much more active, as you can see by the pictures.   As silly as it sounds, I'm glad its hard to get him to sit still.  :o)   He grabs at everything, especially his feeding tube, but loves to hold balls, rattles, and his little animals.  We try to introduce all toys to his left hand to encourage usage.  He still uses his right dominantly.  He's trying super hard to roll over, but his bottom half just can't figure it out yet.  He is tolerating tummy time a bit more  (maybe a half minute) and his neck control is showing some improvement.  He has various therapies 5 times a week and is working SO hard.  It is serious exercise for him.  He breathes harder throughout and is worn out immediately after.  We are so proud of him and his hard work.  The kids came to a couple of his therapies (thanks to the polar freeze).  Many more questions have been asked by them recently about when he's going to drink and eat like other babies.  They were so good during the therapy rooting him on and encouraging him.  His therapists said his demeanor is unlike most that have been hospitalized the majority of their lives.  She attributes his personality to his siblings.   We were most proud when he tolerated a little bit of sweet potato in his mouth!!! This was a HUGE step!  He didn't know what to do with it, but didn't gag.
He had many appointments this week-  Cardiology (great report), Surgery (changed out mini Mickey button), Hematology (continuing plan to not restart Lovinox, X-ray (lungs/ chest looked better than they had in a long time), ultrasound (blood clot still there, but continues to be non-occlusive), and pediatrician.  Whew!

This was in the waiting room during the 6 hour day of appointments!  Love those rosy, chapped, chunky cheeks!

In exciting news,  Cooper  is so motivated to learn to read.  He loves reading to others, especially his baby brother!  I'm SO proud of him.

Happy New Year

Happy New Year!  I am so ready for a new year… It's going to be a great year.  Full of energy, life, memories, snuggles, wildness, homework, dance performances, baseball games, realistically- many, many doctor appointments, but prayerfully, all of us under one roof, safe and as healthy as we can be!

Not sure when my living room turned into a baseball field-  boys!

Even he was in on our New Year's Eve fun; whereas, she was not so much! 

An exciting end to 2013:  Carole Robinson, with our local newspaper, the Williamson Herald, wrote an incredible story about us and published it in the paper that was distributed after Christmas.  When I was contacted, I agreed, hoping it would bring awareness about congenital heart defects, in particular HLHS as well as show what an incredible community we live in.  After reading it, I know that God's hands were all over Carole's words.  It was beautifully written and brought tears to my eyes as I read it.  The kids were so excited to see themselves in the newspaper.  

Merry Christmas

Merry Christmas!  What a glorious celebration we've had.  There's been such excitement in the house mainly because they love that we are all home, with the focus on Christ-- not completely focused on Caleb's condition, being worried, doing work, or even cleaning up!  As I rocked the baby to sleep on the eve of his first Christmas, I thought about how Mary must've felt (the song "Mary Did You Know" was running through my head).  It was a special calming time Jesus was giving me and my frequent reminder that he has great plans for us.  

I meant to write a post over the holiday about the Christmas music.  This season, I was in the car a lot more than normal driving to and from the hospital.  I found such joy in the words of the songs.  Many days, I found myself singing quite loudly one second and bawling the next.  My favorite song was "Joseph's Lullaby"-  I would sing it to Caleb over and over.  Something about it gave me courage and peace.  

We do have daily scary moments.  I don't know that I will ever have a day go by that I don't find myself staring at his breathing/ looking at his coloring/ questioning if all is okay.  His coloring is blue and he is always "crunchy" sounding-   I guess its just the extra secretions that he has trouble clearing like a typical child does.  He gets choked up on them and at times seems as if he can't breathe and is suffocating-- very scary!  I just need someone else to say- it is or isn't okay.  I'm so thankful for best friends and neighbors that have done this for me when Zack wasn't home.   It's going to be a LONG winter season.  Thankfully, he hasn't had any seizures-  we have an appointment with neurosurgery tomorrow.  The glue is starting to come up on part of the incision.  He acts as if it is still very tender and has cried out a couple of times when something has touched it.   I'm trying to work on his tummy time tolerance.  He still doesn't last long.  I find it hard to find minutes to do this when he isn't eating (hooked up to the feeding pump), getting meds, had a fully belly, or just acts as if he doesn't feel good.  I'm working on getting past that excuse (it's an excuse because I don't like to see him act upset).  We have to build up his neck strength. 

We've played lots of board games (we have the King of Monopoly over here), jumped on new pogo sticks, been crafty with a rainbow loom, and now on to cleaning up from the chaos!

All the kids (Aunt Courtney and Uncle Robby are big kids, too) ready to run downstairs to see if Santa came!

Hospital admittance

Baby Caleb had to be admitted on Friday to the hospital.  He's had a cough for the last few weeks, but he actually stopped breathing briefly two nights in a row from secretions that he couldn't get up.  His cough is very weak and actually not "sick-like")-  more as if he's too tired to clear it.  He did another 24 hour EEG to monitor if he's having seizures and it looked good.  They are going to start tapering off phenobarbital and he'll be off it in two weeks and are adjusting another med's dosage times.  This should help with his lethargy-  which they suspect is causing the "cough".  He is getting discharged today.