2 Years Old

Happy 2nd Birthday to our little Buddy!  He's finally discovered how great it is to eat.  Not just put food in his mouth and spit it back out, but actually chew and swallow!  Over the last few weeks, he's made so much progress. I'm working on keeping his meals balanced, which he actually eats better than a few of my kiddos.  Due to his dairy allergy, it gets a bit tricky, considering it is in so many foods that we eat.  (and of course, he wants whatever the others are eating).  So I do a lot of cooking with coconut milk and alternative, non dairy butters (sounds yummy, huh!?) and freeze the leftovers to give to him at later meals to make for easy prep.  He likes pancakes, coconut milk yogurt, salsa (eats straight salsa out of a bowl!), spaghetti sauce, chicken, salmon, sandwiches with almond butter or peanut butter, hummus, fruit pouches, fruit- apple slices, mandarin oranges, bananas, and so much more!   I honestly am still scared to "announce" that he is eating in fear that he's going to stop.  As of this past week, Cardiology cut out one of his four bolus feeds a day.  This is a huge step. Seriously, an incredible birthday gift!  I've found my stress level is drastically increased, though, since this happened.  It's such a different feeling that he HAS to eat.  I have to prove that he will gain weight (and sufficient weight).  He had a couple of days last week that he didn't do as great, and I secretively got so nervous.  He does best when I sit and give him little bites on the right side of his mouth (one bite at a time).  He wants to be like any other two year old and have a plate full or stuff his mouth with one bite quickly after another, but that is never effective and he can't handle chewing and swallowing properly and it all comes out.  Prayers for continued decreases in his boluses which is the plan as long as he continues this path!!
He loves using his walker to get around.  He wants to be outside all the time.  As soon as we get outside and in his walker, he beelines it to the path to his best buddy's house, even taking his walker off road a bit with no trouble at all! His other favorite spot is standing right in the middle of the big kids as they play ball.  His core is getting stronger by the day and I just know he will be walking on his own soon.  He's about taking a step on his own.
We started trying to teach him to hold up two fingers when asked how old are you.  He is getting closer.  It looks more like the VU symbol so the boys like that!
He uses sign language for a few words, but is learning the words as well.  He signs: more, please, go, eat.  He says elmo, mama, dada, pippaw, more, please, bo bo, bu bu, ball, dog, and is starting to make a few animal noises.  They are all modified but we love his little voice!
My favorite update is so special to me. The kids always talk about how Jesus is in their hearts and I just have always felt a peace in knowing that although Caleb has a half a heart, this boy has Jesus fulfilling his whole heart.  A couple of nights ago, as we were praying before bedtime, Bo looked over at Caleb and gleefully shouted, "look, Caleb's folding his hands to Jesus".  Although this may not seem huge for a typical two year old, Caleb is developmentally almost a one year old.  Without anyone asking him to imitate, he saw the boys and did it on his own and almost made an Amen sound.  All I can say is that I know his little relationship with Christ is so much more than we can even imagine!!  He continues to bless our lives so much each and every day.
It's impossible to not think often that two years ago from Thursday, we handed over our baby for his first open heart surgery.  The boys were playing with my phone in the car yesterday and changing the ringtones over & over.  They kept pushing one in particular and the second I heard it, brought chills down my spine, and honestly nausea.  It was the alarm I used to wake me throughout the night at the hospital.  Sounds such as this, certain smells, thoughts of friends' children in the hospital, bring all the reality rushing back.
Psalms 119:105 "Your word is a lamp for my feet, a light on my path".  Just as a lamp helps us see what is right underfoot, we must trust God will take us through the next steps along our path.
We have a lot of doc appointments coming up soon.  I don't suspect anything radical, but would be great to just stay at the pace he's on and let his body grow, develop, & hit more milestones before next surgery.

Caleb's Favorite Things at Two Years Old:
Reading Books, especially his Elmo Look n Find
Sesame Street- Elmo
Mickey Mouse
Bathtime
Outside
Balls, Swinging
Watching his brother's play baseball
Going in his sister's room to say night night to a Mickey Mouse figurine
His therapists
Sliding at Therapy
Eating  (yippee!)
Blankie
playing in mommy's kitchen cabinets

How Old are you?

A chilly Sunrise Easter 2015

We were so proud of Jake, who celebrated his First Communion.  He is a great Christian example for his siblings.

So Many Likes

As sweet and excited Nicole posted, Caleb has started propelling his walker forward on his own! He began moving forward on his own last week and we turned his wheels to swivel mode this week.  He is still very cautious and is figuring out this getting around thing, but now has the ability to be in upright mode which makes for much better scenery!  He only lasts a bit because it's a lot of work to hold his body up.  He has made so much progress.  His lower half is so much stronger.  His core is still pretty weak (due to so many surgeries) and is really what's holding him back from walking independently.  He cruises around the furniture and every now and then does something that surprises us all- this morning we blinked and he was sitting atop the ottoman.  No one claimed to have helped him and he was all grins, as if to say, "Look what I did!".  He is making some improvements in his feeding, as well.  He is doing continuous munching!  He puts a bite of something in his mouth and he chews over and over and may even swallow a bit.  He loves his Honey Nut Cheerios, but this week discovered Oreos.  He does really well with them (dispute making a tremendous mess).  He's swallowing some water- not really measurable yet.  Slow steps forward, but progress none the less!
He's been fighting the ear infections, in spite of the tube surgery early December.  He's had an ear infection, strep throat diagnosis, and another really bad ear infection since.  He hardly gets off antibiotic before another hits.  His tonsils were a plus three mid January.  They are going to follow that situation over the next few months-- prayers they go down!
We had an appointment with CADET clinic last week (Complex Aerodigestive Team).- GI, Pulmonology, ENT.  They work with chronically ill children with complex airway problems.  They are looking at the big overall pic.  He constantly sounds like he needs to clear his throat.  We aren't sure what this is from.  He's also on high doses of reflux meds, allergy/ asthma meds and hopefully the team can determine the most effective plan for it all.
We are making a valiant effort with a blended diet.  We tried this back in October, but ended it after a couple of days of epic failure.  He projectile vomited every feed.  The diet consists of same formula (Elecare Jr. mixed to a higher calorie (45 calorie, compared to his normal 30 calorie), with rice cereal, olive oil, sugar, baby foods.  The benefit is that it is heavier in his stomach and shouldn't slosh around like only liquid would.  So far, he's tolerating this attempt great.  It unfortunately feels like I'm pushing syringes of a yucky gunk into his Gtube way too often.  He also has to have a specific amount of free water through his tube.  He doesn't like sitting still during this.  It takes a lot of distraction.  We keep telling him to eat more and we won't have to do this!!  He's done great with the diet so far… until today.  He woke fine but by about 9:00 started acting odd (honestly, we worried he was seizing).  After acting out of sorts for a bit, he started throwing up and could hardly stop for hours.  We couldn't figure out why this occurred but I stopped regular feeds, started pedialyte regimen, and held him without moving for hours. By mid afternoon, he made a turn for the better and had a fine rest of the night.  These are the days I despise-- Not knowing how long is too long to wait at home vs. rushing to hospital.  Feeling like I'm "playing doctor"with feeds on a child that can get dehydrated so, so easily.  Ugh….
Just want to digress a moment.  As I just saw the video of Caleb propelling along and then noticed how many "likes" it received, I had that WOW moment.  We are so blessed every moment of every day to see the true miracle, or as RuthAnn wrote, a "true walking miracle"- almost- that he is.  I hope that all our family and friends know that we don't take for granted that he is God's child, & we are so blessed to be his parents--but a part of so many people's life, via prayer and love, for some huge gigantic plan that only God knows.  It is indescribable to be on this side of seeing the outpouring of happiness from others.  It feels like a huge hug.  And let me tell you, that huge hug is so needed.  All of these updates are incredible and show the progress he is making, but they come from a lot of therapies and doc appointments. We are blessed with an amazing team that love him so much and work so hard to get him where he is. Not one day goes by that we aren't praising God for everyone that loves Caleb, works with Caleb, but also those that love our family.  The hugs, notes, messages, likes, etc. get us from day to day and help us see the wonderful little and big things that can easily be overseen when going through the motions of daily routine.

Christmas 2014

What a beautiful day Christmas 2014 was!  The sun was shining and 5 happy faces woke rediculously early (well, a couple were woken) to celebrate the day.  Many times today we praised God for the gifts he has given us, most importantly Jesus as the center of our lives, our family and the love and grace we have for each other, being at home to celebrate the season together rather than in the hospital like so many that we pray so hard for, & hope for the coming year.  

Cath and Ear Tubes

Caleb had a cardiac cath yesterday.  We had to be there super early so the other kids prayed over him the night before and Coop told him he could have his horsey stuffed animal (he prefaced it by saying he didn't like or want it anymore- which he didn't mean.)  He was trying to be sweet in his cool way.  Then he said he wasn't going to school.  I know they get nervous for their brother, as was Pippaw who knows all too well about having these done.  He was especially nervous for Caleb now that he's getting older and recognizing what is going on.
We got to the hospital for check in and he was blowing everyone hundreds of kisses.  Always the sweet boy.  He had to have three arteries that lead off the aorta angioplastied- his subclavian artery (brings blood to left arm), carotid artery (brings blood to left side of brain), and innominate artery (brings blood to right arm and right side of brain).  They used the largest balloon for his size to open up the significant narrowing in each artery.
They were very pleased with his heart function, which is a very good update.
The ENT came in and put ear tubes in, as well.  YEA!  He drained the fluid so hopefully this will alleviate the constant ear pain (which frequent fluid along with the Glenn anatomy is a set up for uncomfortableness!).
Caleb came off the ventilator easily but had a very hard afternoon and night.  The effects of the anesthesia made him want to keep sleeping and not wake, but then when he tried to wake, he was angry (but couldn't move due to the cath sites-  they went in his femoral vein in his groin and his jugular vein in his neck).  His ears bled a good bit all afternoon due to the heparin he had during the cath.
It is incredible the interventions the physicians can do via catheter.  Although it's hard to watch him hurt  (his throat is sore from the vent tube), this is minor compared to a heart surgery.  It is crazy to think, though, that procedures such as this are what keeps him alive and that he has to have these annually. Thank you to the Great Physician for these blessings!
We were discharged this morning!  Yippea!  I think being home will be the best medicine.  He really just needs to catch up on sleep and get lots of sibling loving!

We had a super surprise visit from Santa Claus over Thanksgiving.  It was a blessing to get to see him yet keep little Caleb isolated from lots of people!  Thank you special elves for sending him!

18 1/2 months old

Over the past couple of months, we've had a few ups and downs.  I've been meaning to update this blog, but it's challenging enough to get through our typical day and accomplish everything that "has" to be done!  I literally think to myself in spare moments -  "get the have-to's done first- clean syringes, redose meds, feeds set up for baby, laundry, food for other kids- well, I attempt to get meals done, but don't always accomplish that!"
So to catch up on the past few months--  The hypoglycemia/hyperinsulinism has normalized.  I keep a glucometer with me at all times, but haven't had to check Caleb's blood in a long time.  Oddly, we never found a reason for this, but also that is a blessing!  After we got home, for weeks, the baby was throwing up every day, multiple times and had an odd cough.  His stomach ph level was very low and should be around 4 (it was 1.7), so his throw up was so painful/ burning from acidity.    While trying to figure out the cause of his throwing up/ cough, he was sent for an X-ray which showed he had pneumonia in his right lung.  He had already been on and completed two doses of antibiotics for ear infections, so this was a third to battle this.  Thankfully, he got through that scary diagnosis fairly smoothly.  Unfortunately, it seems that once someone has gotten pneumonia, they are highly susceptible to it.
He had a scheduled appointment with audiology to check his ears (which is routine for kids that are high risk due to being on the vent for prolonged periods).  I never suspected any issues and was shocked to learn that he has mild-moderate hearing loss.  One ear had fluid (automatically fail- so they will retest later), but the "good" ear presented hearing loss.  He was referred to an ENT to follow up on the fluid and formulate a plan.  The doctor scoped him and found that he has a significant amount of mucus that sits on top of his vocal box.  We have known he has extra secretions and constantly hear him "gargling" so this was the visual.  The question is whether it is caused from the allergies/ sinus issues, or from reflux.  They added singulair to his allergy meds of zyrtec and flonase and said to completely cut out milk.   He will have tubes put in both ears when they do his cardiac catheter to hopefully diminish the fluid that is a constant in his ears.  After that, we will decide the best plan for his hearing.
In the meantime, we are all working on sound and language development.  We try to get him to mimic sounds as well as learn a few signs to give him a way to communicate his wants.  (He has learned the signs for 'more', and 'all done' and uses both appropriately!)
He has gone from throwing up daily, to not at all!  Almost simultaneously, we saw drastic differences in his feeding.
He has made tremendous strides in therapy.  Caleb is kind of/ almost eating!!!  He loves Honey Nut Cheerios and will sit and put them in his mouth and chew with his mouth closed with the most adorable little movements.  Typically his bites eventually fall out, but we are just super stoked with what he has progressed to.  He sits and eats meals- cookies, salmon, bacon, sausage, bread, applesauce!!  His desire for independence has been a game changer, as well.  He wants to use a fork or spoon or use a beautiful pincer grasp to put food in his mouth himself.  Please pray that this continues and increases, because it is HUGE!
He is also making progress in his desire to walk.  He goes from sitting to tall knees frequently, and has gone to a standing position one time on his own.  Although his sure step inserts make it hard to crawl, they help him so much when working on standing and walking.  He loves to practice walking and is very proud.

Halloween was a blast-- freezing, but it didn't slow down our crew.  We had a beautiful butterfly, two green aliens, one Captain Underpants (yes, he did create his own outfit and I just let it go!), and the most precious chunky cheeked Mickey Mouse!

Discharged

He's getting discharged today without an official diagnosis of why it's happening.   He has been having episodes of hypoglycemia with hyperinsulinism.  Suspect is that it is related to his Nissen Fundoplication, called Postprandial hypoglycemia (late phase Dumping Syndrome), in which his food moves into his small intestine rapidly causing a rapid rise and fall in his blood sugar level.  We will go home with a glucometer and will check his blood throughout his day and night and monitor closely for changes in behavior.  He had PVC's overnight and went into vtach.  They had to draw blood for stat labs, but had great difficulty.  A PCICU doc came up and after much trial, was able to get an arterial stick in his groin. All of this work up and the frequent blood pricks have caused an increase in his anxiety towards even just seeing gloves on anyone's hands!  But in spite of it all, the sweet guy has blown a million kisses to everyone. He loved riding around in the new cars on the floor, blowing kisses and saying "hi"!

Endocrinology- low blood sugar levels

Labor Day turned into another hospital stay.  After contemplating whether or not to bring him in much of the day, we ended up in the ED around 11:30 pm.  He was febrile (but very low grade) and in respiratory distress.   Initial blood results showed he was dry, low white cell count, & very low blood sugar.  They gave fluids and sugar and admitted him to the PCICU.  They ran many tests- ct scan, lumbar puncture, echo, EKG, EEG, lots of bloodwork- but all came back negative.  They started him on IV antibiotics to cover any possible infection.  He has been so lethargic, wanting to sleep all of the time, and if he awoke, he was not "there"-  eyes rolling, tongue deveating.  We've questioned many times if he was seizing.  Last night and then again this morning, his arms stiffened and tongue repeatedly deveating, and his eyes rolled back over and over.  His blood sugar was very low on the morning labs (46).  After the seizure activity, they immediately checked it again (44).  Endocrinology was called and they requested many blood tests to determine the cause of these drops.  Glucose came back immediately (it had dropped more to 33 !).  We're waiting on the results of the remaining tests and tracking levels throughout the day and night to formulate the next steps.  Praying for answers to this new situation.  He's not pleased with being pricked as frequently as this is requiring, but we are thankful to maybe be on a track to understanding recent behaviors.