School

Wow, it has been 3 months since I posted, sorry.  I've said it before and I'll say it again...I'm lazy.  So let's skip to the good stuff...

Caelen had a great long vacation in Florida visiting with friends and family.  He continues to do well and is still off the oxygen.  He is pulling up and cruising on everything but not yet walking.  However, just this week he finally stood up straight without holding on to something.  He has only gotten his hands and butt off the ground so far, but this is a major step forward.  Hoping that he'll be walking by Christmas.

Caelen and I went back to Florida for a week in October to go to Disney with my sister Jen and her husband's family, the Naruts.  What an awesome time!  (Thank you all again for sharing your vacation with us, we are forever grateful.)  Caelen did great on the plane rides and had a lot of fun playing with cousin Lily and her cousin Oscar who is 3.  Oscar even shared some of his matchbox cars with Caelen and we are now the proud owners of an ever increasing collection. 

While there we went to downtown Disney and rode the carousel which C did not like, went to the Magic Kingdom and rode a river boat, Pirates of the Caribbean and the Haunted Mansion.  The last 2 did not go over well.  But at least we did them.  We walked around while the rest of the gang rode more rides.  The next day we went to Sea World and Caelen saw sea lions, penguins, dolphins, parrots and so much more.  The only thing we missed was Shamu because Caelen fell asleep.  But all in all, it was a good day.  Our last day there we spent at the hotels water park and Caelen went down a few small water slides and did great.



On plane headed for Disney



Caelen trying to get the fish swimming in the aquarium under his feet in Sea World Atlantis



Sea World

He had a great Halloween and was a monster!  Not too far from his personality so we stuck with what we know.  

He went trick or treating for a few minutes on his tricycle but it was really chilly out and his hands and face got cold very quickly.  So in he went to play with his favorite toy, the ipad.   It's hard to take away from him if he gets it but he is very proficient with it and is even teaching Martin and I shortcuts.

We registered Caelen for "school" today and he is going to start next week for 2 days in the mornings and we'll see how he does.  I took him into the classroom to meet the other kids and play and he had so much fun he didn't want to leave.  I was really worried that I was going to be there all morning next Tuesday with him, but based on today's response, I'd say I'm good to go.

This is such a big milestone for Caelen to be attending school/daycare.  A year ago we weren't even thinking about daycare possibilities because of the oxygen and feeding pump dependencies, and today we're enrolling him in school.  I am so proud of how far Caelen has come in the 15 months since he got out of the hospital.  A whole new world is opening up for him and I can't wait!

A quick update on his heart and then we'll say goodbye.  We are going back to see the cardiologist after Thanksgiving for a checkup, but back in September when he had his last EKG and echo, everything was fine.  No changes and we are status quo.  The Dr.suggested we do another catheterization in the spring to assess his heart and get a better picture of when his 3rd surgery will be.  So for now, we're just enjoying each day.



Caelen sitting in the bucket of a tractor



Donald Duck

Love, Katye, Martin & Caelen

Welcome to Florida

Happy Monday everyone!  Caelen and I decided to take a road trip about 2 weeks ago and what better place than Florida to visit with my family and friends.  My sister Jen flew up to DC and we took the auto train down to Sanford.  That was kinda fun.  Not a bad way to travel if you get the sleeper car.  The trick is to sleep.  I think the next time that the room steward asks us if we want a whole bottle of wine, I may take him up, cause passing out is the only way I can see adults sleeping.  But all in all not bad.

waiting for the train to leave

watching a dvd before bed - Nemo of course

We have been staying with Jen and her husband Noah and their daughter Lily.  This was our first time meeting Lily who is only 7 weeks younger than Caelen.  Clearly it was about time!  We have been having a blast and the 2 kids are finally starting to get along. 

Let me rephrase that, Lily is better tolerating Caelen.  Poor guys doesn't understand that you can't just grab everyone's nose or smack them in the face as a form of play.  Lily, currently being taught in pre-school that hitting and touching is not nice, is having a harder time with Caelen's form of play.  So far so good, only one good claw of the nose and one bite in retaliation and no bloodshed so far.

We also got to see my other sister Kelly and her boyfriend Adam, they flew in from Calgary to be here for the weekend (we have great timing).  So it was a Herron girls reunion!!  Saturday we went to my Dad's house and had a pool party.  Both kids did great and loved the pool. Sunday we took the kids for a carousel ride, kids gym and haircuts, then back for naps.  Aunt Kelly took 1300 pictures in 36 hours, so I can't post all of those, but here's a few:

 

Aunt Kelly and Adam babysitting kids

Uncle Adam's turn

blue "tips" in his spiky hair after cut

eating pretzels and drinking water after nap

 The best part of our trip so far is that Caelen has been off of oxygen since we left Maryland, yay Caelen!!!!  Aside from a GI bug that he picked up on the ride down, he is doing great!  Caelen is also pulling up on everything and cruising along furniture.  He's trying crawling too, but that's a little harder.  He has made so much progress in the last 2 weeks and we couldn't be happier!  Later today we are heading out to stay with my friends the Carpenters down in Boca and I can't wait.

Until the next round of photos, have a great week!
Love, Katye, Martin & Caelen

Kennedy Krieger - atleast they had free valet parking

I think the best part about our feeding evaluation with KK yesterday was that they had free valet parking. 

Does that give you an idea of how our appt went?  Ana (our fab speech therapist) went with us and would probably say it wasn't that bad.  I on the other hand feel very deflated.  I will say that I put way too many expectations into this appt and that it's my fault that I am disappointed.  I thought they were going to be the magic bullet that solved all of Caelen's feeding issues and got him eating like a normal healthy child. 

Basically in a nut shell here is what they had to say: Caelen is not ready for their feeding program yet. They are afraid of him from a medical standpoint and I wasn't expecting this. I am so used to dealing with the folks at Children's who see kids like Caelen daily and aren't phased by his extensive medical history.  I'm not even phased by it anymore, in fact I think he's doing remarkably well, and dare I say normal!  So it was disappointing to see a feeding team apprehensive about working with us right now.  They don't like that he de-saturated down to 74 when they scared him.  But he recovered back to the 80's very quickly (we're talking less than 2 minutes here.)  To their credit, there was not a GI Dr there or a cardiologist, rather, the team consisted of a Nurse Practitioner, nutritionist, speech therapist  and behaviorist. 

Again, I expected more than what their program offers, and assumed the team would have a doctor there to understand his history and assess his condition as it relates to moving forward with feeding.  While the Nurse Practitioner tried, it's not her fault that they aren't familiar with his cardiac condition.  I guess what baffles me is that their specialty is getting tube fed children to eat.  What it really boils down to is that they get tube fed children with behavioral problems to eat, not tube fed children who have tubes as a result of prolonged medical care.  Did I mention that KK is part of Hopkins?

I pondered this on the drive home and for the rest of the night and was just so deflated.  So I was glad when the speech therapist called today to verify Ana's name for their note, and then asked me if I understood why Caelen isn't ready for their program yet.  I got a chance to speak my mind and tell her that I don't understand why KK would take another heart patient and friend of ours into the program, but not us.  I told her that they are afraid of Caelen's medical history and that they aren't giving us a chance.  Not that it matters, but it made me feel better.  We agreed to have another eval in 6 months and take it from there.

Since I have been so negative, allow me to be positive and brag about the fabulousness that is Ana!  Since Ana demonstrated the feeding routine for KK,  they didn't really have a lot to offer in the way of suggestions for feeding Caelen.  They thought that she and we (nice grammar, eh?) are doing everything that we should be doing, and they were impressed with how well Caelen has done in such a short amount of time.  Yay for Ana and Caelen!  So, we'll just keep plugging away and make our own progress.  I would love it if when Caelen is finally "ready" for their program, we don't need it anymore.  That would be awesome!  Now that's something to pray for ;)

Other than that, the little monkey, who is now called the little monster because of his monster noises is doing well.  When I ask him if he's a monster he grunts.  So it's cute, he's like a toy.  He scoots down the halls making monkey noises when he's really excited (seriously, it sounds like we have a pet monkey), and when he's happy he makes monster noises.  He is doing better with standing and walking with assistance, but he's still hesitant to "cruise" along furniture.  But he's getting there.  I am happy to be planning his 2nd birthday party at home <GIANT SMILE> and my stress for that is do I go with dinosaur theme or Yo Gabba Gabba, lol!  These are good problems to have, especially compared to a year ago.  And for anyone who might be wondering, yes, I have already ordered the cake, and yes, it will be 3 tiers again ;)

Thank you to all who still keep up with Caelen and my ADD brain.  We hope everyone has a great week!

Love, Katye, Martin & Caelen

quick update

Quick update for the platelets...

Martin took Caelen this morning and his platelets were back to 150, so thank God again for small miracles, we're back in the right direction.  The viral rash appears to be dissipating and the other 2 are hanging on. 

We took Caelen to dinner tonight with Martin's Family and he did surprisingly well!  Sat in the high chair for 2 hours!!!  Maybe this means we can actually go to dinner as a family?  Again, small miracles.

Have a great weekend!!!

Love, Katye, Martin & Caelen

yuck, what is that?

Yuck, Caelen has 3 different rashes going on, nice huh?  He has folliculitis in his diaper area from playing in his pool, a viral rash which is contagious and pitikia which could have come from the virus.  When he does something, he makes sure he goes all the way.  The pic below is just the face rash and it's kinda hard to see, but he is a hot mess!  This was in the Wednesday Dr appt.  Dr. said it was just viral, leave it alone, it'll go away in 5-7 days and give benadryl 4x day.

On Thursday I went back to a different pediatrician in the practice b/c I had a feeling more was going on than just a viral rash.  The look on the 2nd Dr's face said it all, lol.  This was not something benadryl was going to help, so we got an antibiotic for the folliculitis and a topical for his diaper area.  He seems to be handling it for the most part.  He had to get a finger stick yesterday to check his white blood cells and his platelets.  WBC's were good and platelets were slightly below normal (131 vs 150 normal), so we go back tomorrow morning for another finger stick to see which way he is trending.  Hopefully up since the rash started on Monday.

This morning he got his hearing tested b/c the docs were worried that Caelen might not have full range in his hearing from all of the antibiotics and diuretics that he's been on.  Thankfully, Caelen passed all tests and his hearing is good.  Hooray for small miracles :)

I'm flip flopping back and forth b/c I have severe ADD today, but we also had a kidney ultrasound done yesterday and today for routine follow up before our nephrology appt this month, and blood draw attempts last Thursday and Monday for same appt.  I say attempts b/c Caelen didn't want to give up the blood.  We've destroyed his veins.  Not sure what to do for the blood work, but the kidney doc said we could wait a little while and figure it out later.  I have a feeling we'll be making an appt with Sam from the IV team at Children's.  Maybe we'll make a day of it and visit Caelen's favorite nurses.

Ok, going back even further in our recent history, Caelen got his first bloody lip a few weeks ago.  He fell mouth first into the coffee table.  Blood was everywhere and I gotta say, that one freaked me out.  It's weird how the big stuff like heart, kidneys, lungs don't worry me, but a busted lip and blood scared the heck out of me.  I guess it's the fear of "normal" kid things that I am only now starting to experience.  Thankfully, my friend Kelly answered her phone when I called and told me to put ice on it and hold pressure.  So I gave him a frozen washcloth that he ate for 2 minutes max and then went back to eating cheerios.  Clearly he was fine, and I was very happy that he clotted so fast considering he is on baby aspirin to thin his blood.  Here's a pic of the busted lip

and the bruised lip that followed

We are anxiously awaiting our appt with Kennedy Krieger on Tuesday for a feeding evaluation to see how Caelen is doing and see if they can offer any help.  I'll be sure to post their findings.  Other than that, we don't have a whole lot of plans this weekend, just gonna hang around and stay away from Drs as much as possible.

We hope you all have a wonderful 4th of July!!!

Love, Katye, Martin & Caelen

Can you say Cookie Monster?

These last 2 weeks have been awesome as far as food goes!  Literally, the day after my last post Caelen started licking biter cookies.  He'd lick the cookie until it became a mushy mess.  Slowly over the 2 weeks, he'd bite the cookie and spit out the pieces.  Next he learned how to dissolve the pieces in his mouth, and now he bites the pieces and chews and swallows them!!!  He has become such a cookie monster that he signs "more" every time he runs out of cookies, and throws a fit if he doesn't get more.  So how many cookies are too much in a day?  I don't know, but hey, my kid is eating!!!  So we'll figure out the nutrition aspect later.  Other than nilla wafers and biter biscuits, he eats puffs (finally) and licks tortilla chips.  So we are off to a good start.

He is also starting to understand that other children are fun and he is becoming more interactive with them.  We had a play date last week with our heart friend Rosie, her brother Lee and her awesome Mommy Lori, and Caelen had such a great time!  It was like he was figuring out that this is what other kids do.  We saw our friends the Laycooks recently and Caelen got to play with their 9 month old son Judd.  This is Caelen trying to poke baby Judd's nose:

Caelen believes that this is an acceptable form of greeting.  We'll teach him.  But we're just so happy that he is finally showing interest in other kids. 

We had our 3 month cardiology follow up on Monday (a few weeks early actually.)  Love it when Caelen decides to change the game plan.

 

He was scheduled for the end of the month, but about 2 weeks ago his heart rate started dropping into the upper 50's when he sleeps.  It doesn't stay there, but it is enough to set off the alarms and scare the crap out of me everytime he does it.  We attributed it to his naps getting shorter and shorter (more on that later), and maybe that he was falling into a really deep sleep causing his heart rate to drop.  But he also has an issue with his hands and feet getting cold from time to time.  That's the one that really scared me.  When you mix the 2 problems together, you get a set of freaked out parents.  So our doc got us in on Monday and we had an EKG and an echo.  Both were great, showed that his heart function is good, his venous return in his legs is good and he has strong pulses in his groin. 

So our doc thinks that the pulse ox just isn't getting a true read of his heart rate, and more likely he is averaging in the mid 60's when he is in deep sleep.  We were able to get the pulse ox machine reset with a new lower limit for his heart rate and voila! no more alarms.  His oxygen has been really good thru all of this too, so we have started night time oxygen trials where the nurses turn off the o2 for an hour at a time and chart his o2 levels.  So far, he's been staying in the 80's for his oxygen (scary for healthy adult but awesome for heart kids.)  We hope to him weaned off oxygen by the end of the summer.  As for the extremities getting cold, the doc thinks that it is probably ambient room temps and that he is more susceptible to the environment.  So we will need to keep socks on him for now when he is on the wood floors, no biggie.

Back to the naps, what the heck man?!?!  Why is he only sleeping 45 minutes to an hour at naptime now?  Seriously, I am not ready for him to give up the nap.  This is my time to shower, check emails, eat, you know, "me" time.  45 minutes simply isn't enough "me" time during the day.  When do kids give up naps?  He is almost 22 months, so maybe this is the time, but I am going to fight to keep the nap as long as I can.

Let's end on a cute note.  Granpa and Nan Nan took us on a boat ride a few weeks ago, so here's a pic of Caelen with Daddy:

and playing inside the cabin before we left the dock.

Have a great week!

Love, Katye, Martin & Caelen

Happy Memorial Day

Happy Memorial Day everyone, and to our service men and women - THANK YOU! 
(Hi Uncle Noah & Aunt Jen)

Things on our end continue to be normal, dare I say.  Caelen caught another cold and gave it to me, so we've been sick the last 2 weeks, but Caelen did manage to stay off the oxygen this go round.  Yay for little miracles. 

All in all, life is good.  Caelen is still getting some form of therapy 4 days a week, and we also just started mommy & me swim class, but the jury is out on that one.  Good thing is that Caelen LOVES the water, but he hates the class.  So I'm still going to take Caelen and we'll follow along when we can, then make up our own routine when it's necessary.

Caelen does love the deck and Brid's water bowl still, but he's gotten much better at her indoor food bowl and has improved his fine motor skills through the utilization of her kibble.  He likes to grab handuls then put the pieces back one at a time.  Well, sometimes he puts them back.  I keep the broom handy.  See said motor skills below:

He's also gotten quite good at removing the vent covers and hiding phones, remotes, toys, etc, so Martin fixed that issue with double sided sticky tape recently.

He's also still eating mostly everything but food, but small improvements are being made weekly with our awesome speech therapist Ana.  She helped me get an appointment at Kennedy Krieger on July 5th to meet with their feeding team for an evaluation and to see if we qualify for their feeding program.  We'll see.  In the meantime, here's some pics of non-food crap in his mouth.



Last but not least, Martin plays a game with Caelen where Caelen touches Martin's beer and says, "cold!" Then Caelen laughs.  This started out fun but got played one too many times...

We hope everyone had a great holiday weekend, and again, thank you to our armed forces for kicking ass and saving ours' everyday!



Love, Katye, Martin & Caelen