Merry Christmas and Happy New 3 Year molars?

Merry Merry and Happy Happy to all!  We survived Caelen's last 2 weeks of misery and think we may be turning a corner.  Around this new corner we believe are 3 year molars.  What the heck man?  I stopped reading the baby books when I realized that Caelen had his own plan.  So it never occurred to me that there could be another set.  Really?  Guess this is what I get for not doing my homework.

We went back to the pediatrician AGAIN last Friday.  We really did manage to make it every other day for 2 weeks.  That's a record for us.  On the plus side, Caelen's oxygen requirements are shrinking.  The Dr. advised us to give Caelen his extra dose of Diuril back and it is working.  I just wish it worked for teething.  We are starting to think that the reason that Caelen has been awake every 2 hours for the last 2 weeks, well, aside from the cold, the ear infections, the bacterial infection and the rash, is that his molars are coming through.  I can't be sure though because he'd bite me if I got my fingers that far back.  In the meantime, we're starting to adjust to the continuous lack of sleep.  It's kinda like having a newborn again.  Funnnnn....................

Let's just skip to the good parts, the photos from Christmas.  Santa brought us a new camera, so I have been try to paparazzi it up.  You went from a lack of photos to now a new influx.  Enjoy!



the first time Caelen sees a cat



playing cars with cousin PJ









Caelen gets a mini version of Daddy's truck





Uncle Bruce, Aunt Michelle, Cousins Shannon and Brock



Granpa and Nan Nan

Love,
Katye, Martin & Caelen



You take the good, you take the bad, you take them both...

Ahhh, the Facts of Life.  I wish Caelen's saga would wrap itself up neatly in a half hour program.

We started the day with a nasty rash on his head, face, neck and torso.  Off to the pediatrician we went again.  We've literally been there every other day for a week and a half.  The bad news is that his ear infections are not responding to the new antibiotic and Caelen is also allergic to it.  So we are going to try a third antibiotic, Augmentin extra strength.  I'm happy that this will supposedly work, but it is hell on his stomach and bum.  He also got pink eye again, 3rd one now.  Woo hoo!  Isn't there a prize that should be given to the kids and parents for surviving so much crap in 2 weeks?!?

Oh yes, the prize...I can't always be doom and gloom.  We saw the nephrologist this afternoon for our 6 month follow up and got great news.  Caelen's kidneys are doing better and the venous pressures are dropping.  The Dr. said that he actually has good kidneys, there was just a lot of congestion surrounding them.  And as we continue to wean off of the diuretics, we should continue to see improvement.  We are heading in the right direction, and I literally started crying when the Dr. told me this.  Finally, some much needed good news.  We do not have to add another medication to our regimen as was thought 6 months ago. 

I am hoping to not have to update again until Christmas with photos of Caelen playing with boxes and toys thrown aside.  In that hope, I wish you all Happy Hanukkah, Merry Christmas and Happy everything :)

Love, Katye, Martin & Caelen

Double dose of yuckiness

Well it's certainly been an adventure in our household this past week.  Caelen now has double ear infections and probably a sinus infection too.  I was ready to give Caelen to the pediatrician yesterday,  he's already got 5, what's one more? 

Fortunately the Dr. got Caelen switched over to a new antibiotic and he seems to be responding.  Don't get me wrong, we were still up every 2 hours with Caelen last night, but today has seen a significant improvement in his mood.  We also can't give the ear drops because the Dr. feels that the drop in oxygen sats was too coincidental, so no pain relief for Caelen other than Tylenol.  But all in all, he is finally improving.  We are still on 3 liters of oxygen, which is higher than he was ever on at home before, but hopefully the antibiotic will help kick this crap out of him and we can start weaning again.  I'd still rather be at home on 3 liters of oxygen than in the hospital, so we'll be patient.

Must go now because the words are blending into each other from sleep deprival.  I feel like we have a newborn again.  Here's some pics of cranky Caelen yesterday in the Dr office.

Love, Katye, Martin & Caelen

Tis the Season...for ER visits?

It has been one heck of a cold season here in the Gorman household.  Pretty much since Caelen started daycare last month, it has been non-stop sickness for Caelen, who is then so kind as to pass on to Martin, myself and our babysitter.  My favorite was pink eye last week, only to get it again this week when he got an ear infection and upper respiratory infection.  This one is the one that's been the hardest.  This is only Caelen's 2nd ear infection, and the poor boy is miserable.  It makes me feel helpless because I can't do anything for him.

I took him to the Dr. on Thursday and he gave us the numbing ear drops, but they came with the caveat that said only to use them as a last resort because they have a rare side effect.  That rare and almost never seen effect is that they can cause cyanosis (lack of oxygen/blue), trouble breathing and the kids can become lethargic.  Well guess who has to be rare.

Fast forward 8 hours later and I can finish this post that was started during nap.  We just got back from the ER because the Dr thought Caelen's dropping sats were more likely pneumonia and not the rare side effect.  We had a chest xray and nasal swabs for RSV and flu.  Thankfully, everything is fine.  He just has some nasty viral bug that is taking a toll on him.   He gave the same bug to our babysitter and she tells us that she has headaches, body aches, fever, and general suckiness all around.  I think we may need to give her a raise, I've lost count of the bugs he has given her.

So right now, we have Caelen back on oxygen which he clearly needs, and this is the same reason that we were allowed to come home.  The docs at the local hospital said they would only be giving him oxygen support, so we were free to go.  I have a feeling this will be a long night for all.    :(

But on a positive note, we saw the cardiologist end of Nov and she did an echo and an EKG and both were fine, no changes.  So from a cardiac standpoint Caelen is stable.  Now if we could just get the germs under control we'd be good. 

For now, I bid you all a quiet, germ free, vomit free night.

Love, Katye, Martin & Caelen

Family Photos

Here are some of the family photos that we did last month.  I am so excited to see them in print!  Caelen has certainly come a very long way since leaving the hospital August last year.  Congratulations little buddy :)

Love, Katye, Martin & Caelen

Second Day of School

Ha ha, so Caelen's enthusiasm was short lived on his second day of school.  He did jump out of my arms to play again, but as he saw me leave, he went into spastic toddler mode.  The tears and color changing have become Caelen's trademark.  So I stayed for a little while and played, then the teachers distracted him and I was able to leave the room.  I watched him through the glass for about 5 minutes to make sure that he was ok, then I left. 

Not 2 seconds after I walked in the door, the phone was ringing and the teacher was telling me that Caelen was cyanotic and crying but that his nail beds were no longer purple and he was starting to calm down.  Good thing she has some experience with medically fragile kids, lol.  She said they were about to go on a walk and see if that would calm him down.  Then she'd call me afterwards to give me an update. 

Well and hour goes by and nothing, so I called the school figuring everything was fine and they told me the kids weren't back yet from their stroller ride.  Thinking no news is good news, I went back to my task, then my phone starts blowing up with picture messages from Caelen's teacher.  She sent me great pics of Caelen in the stroller clearly having a great time.  Here's 2 of my favorites.

The school is in a shopping center, so they take the kids in and out of a few larger stores and around the sidewalks.  I also didn't realize they have 6 seater strollers which I thought was hilarious.  Apparently, the kid sitting next to Caelen taught him how to kick the seat in front of him.  Well, atleast he's learning new things, lol.  Check him out in the back of the stroller.

We're going back to school on Monday, but this time I am bringing a small oxygen tank in the most likely event that Caelen throws a fit again.  Until then, have a great weekend everyone :)



Love, Katye, Martin & Caelen

First Day of School

Yay for a successful first day!  Caelen practically jumped out of my arms this morning to start playing and never looked back.  There were no tears, he just scooted towards the kids and toys.  As you can see by the report below, Caelen had a great first day.

I can't begin to tell you how important this piece of paper is to me.  To be able to have some normalcy in our lives and for Caelen to have the chance to be just like any other kid is amazing.  I  was so excited when they handed me this report today.  And although there will be many more to come, this one will go in the baby book.  Here's to Caelen reaching yet another milestone, and that at one time never seemed possible.


 

Love, Katye, Martin & Caelen

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