WHO PAINTED YOUR BABYS HELMET?! Oh my word it's perfect. My son is getting one next week and I'd love to find someone to do this... Or some advice on how to do it myself? Anything would be awesome. THANKS
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@nikosjourney
WHO PAINTED YOUR BABYS HELMET?! Oh my word it's perfect. My son is getting one next week and I'd love to find someone to do this... Or some advice on how to do it myself? Anything would be awesome. THANKS
Why, Goodmorning!
Tough night last night. Very tough night. And very tough morning. He was up almost every hour and when 5:30AM came, Niko was wide awake...(He usually wakes up for the day around 6:15ish). So, GOODMORNING WORLD -__-
Zombie Status... For me, AND Niko.
&OF COURSE, Today is the day we have to go up to Hamilton for his PT at Children's. Horray. . His PT Katie, hasn't seen him since March!! I can't wait to see her reaction when she sees how BIG and improved Niko has gotten! :) Hopefully, today will be the last day of his PT over at Children's, as he already get's PT & OT at home 2x a week. (In my opinion, they should ALL be over and done with! He finally caught up and is doing great! But we will see.)
Alright, Breakfast time for Niko and off to start our day.
It's Been a While!
Oh my goodness! As life has been flying by, I have completely forgotten about our Tumblr community! I can't even remember the last time I posted. So much has happened since those posts.. gives me a headache just thinking about it!
Where do I start first? Good news? Bad? Exciting? Well, as I had gotten a new job opportunity as a pre-school teacher, Niko started day care last month. He was going to the same exact pre-school that my brother and I have both gone to, under same ownership! Little, cute, friendly & safe pre-school close by. It was all perfect, until we had a mad-dash to Bristol Myers Squibb Children's Hospital (Alternative to CHOP). I had gotten a call from his pre-school director, regretfully telling me that Niko had been exposed to the measles on May 29th, and he had 72 hours to get the vaccine. The call was on Friday, at 5:30PM and 72 hrs from exposure would land us at 6:00 AM, the next morning. The reason he had not gotten the vaccine in the first place was because he was too young for it, as they generally give it at twelve months of age. Of course, his pediatricians office was closed for the night, and after calling every doctor and hospital I knew, the only hospitals who carried the MMR vaccine were CHOP, and Bristol Myers Squibb. So, off we went to Bristol Myers, an hour away. At 7pm. As soon as we entered the ER, we were scurried to the Pediatric ER and whisked into an isolation room. Everyone who came in was dressed as if Niko was carrying swine flu, and everyone just kept saying, "I'll look it up". As all they kept ''oo-ing and ahh-ing'' about was the fact that he was the only measles case they had ever seen, as it almost extinct and only in textbooks. They forgot that Niko was the exception to rare cases. After weighing pros and cons about the vaccine, Niko received just the measles vaccine, and not the whole MMR. Off we went, at 11pm on the road to home, and we were to follow up with his pediatrician, Dr. Pawa on Monday morning.
Monday morning came, and as I described to the doctor what had happened, we were told isolation for 21 DAYS. The day the child had his measles rash, May 29, was the day they found out he had measles and reported it. It takes about two to three weeks for ANY symptoms to appear. So, the county health department, and Bristol Myers was wrong about giving him the vaccine. Three weeks in quarantine, and no day care.
Try and guess this one! We get an email LAST WEEK from his daycare director. "Good news!! The child's test results came back NEGATIVE! Measles free! :)". Awesome. After weeks of paranoia, throwing pity-parties, isolation, being petrified.. he didn't have measles. After mad-dashing to the hospital in fear that all of the bad complications would happen to Niko, having to put Niko through the pain of an un-necessaru vaccine, and thinking every teething/heat/normal rash was measles... the results of that boy were NEGATIVE. All of that, for nothing. I mean, I'll take that over him actually having measles, but why? Why the scare? As if I don't have enough on my plate.
I also got a call yesterday from one of the specialists of Niko's care team at CHOP. Had a heart attack seeing caller id, thinking it was his Cardiologist or something! Turns out, it was something good! It was a secretary for the Doctor asking my permission for Niko's images and speaking of Niko. They will be doing a case-study presentation on Niko's case and how to resolve his medical issues. So, that is another thing Niko gets to brag about when he gets older!! LOL. Kind of bittersweet, but if it helps others in the end, it's okay with me.
On a good, GREAT, note... Niko is eight months old, and a whopping 18lbs! Our days consist of him waking up smiling and laughing, eating Gerber 2nd Stage Foods, holding his own spoon, watching Cat and the Hat and Sid the Science Kid, sitting by himself, standing supported, and giving kisses! He has not mastered the crawling thing yet, though. Instead, Niko does things his own way! He will instead roll from one end of the room to his destination across the room. Go Niko!! :)
Days around here have been pretty darn good! Always a new adventure, and discovery every day for little Niko, but I could cry thinking about how much I will miss it ALL. My laptop is actually starting to get too full from all the pictures I've been taking daily! But, they are all memories, and if I have to buy a million and one flash drives to keep them all, so be it. :)
( If the pictures are distorted, you can click the picture for normal view :P )
Oh! & I forgot to mention this little munchkin has not one or two, but THREE sharp little teeth!! UGH! Where did time go!?
Hope everyone is well, and doing great! <3
xoxox Courtney
Posted this on my Facebook page a few days ago. Every expecting mother who received the news of their unborn should watch this. When you hear the heartwrenching words that your child has a heart disease, your world becomes flipped. All you can process through your mind is that your child is not normal. For every expecting mother in our situations, we've been there. We've thought it. We've made those decisions. Truth of the matter is, only the first few months won't be perfect. The rest of the rollar coaster, will go just as planned. & As perfect as life could be. Seeing your child gain weight when doctors say they can't. Seeing your child hit milestones that were expected to be severely delayed. Seeing HOPE on the other side of the dark tunnel. This video is made me a fellow TET, he is actually singing it, too! There IS HOPE. and everything really will work out sooner or later. <3
A beautiful blog post written by a fellow mother of a child with Tetralogy of Fallot.
Happy half birthday Niko! Today, we celebrated Niko's 6 months. We decided that life is too short and you should take nothing for granted, as we also learned today with the terrible Boston bombing. Celebrate the good times and put past the bad in life.. So Niko, happy half birthday. My life, my angel, my fighter, my world, my son. I love you!
Six Months. Six of the longest, fastest months of my life. Niko will be the big '' Half a Year " on Monday! I can not get over how fast the time has gone, but while I sit here and stare at Niko's peaceful and sleepy self in my arms, the real mind-blow is how much has happened in this whole six months.
It feels like he was just born yesterday. I still remember the delivery, my wonderful Aunt flying all the way from Florida to be with him in Philadelphia while I was stuck in Jersey Shore Hospital, the anxiousness to release myself to go to Philadelphia to see him, dragging myself at turtle speed down the hallways of the NICU at CHOP, the whole entirety of the NICU stay, residing at the Philly Ronald McDonald House for the first time, and of course, most of all, getting that perfect outfit ready for his first car ride home, and for his first time going home.
We went from the NICU, to home where Sandy took the reigns. Hurricane Sandy hit us just a few days after coming home, and I can still smell the candles in which we had to use to find Niko in his bassinet, and prepare his bottles in the dark. I can still remember Niko's face as we brought him outside in his adorable little snow bear suit after the Part2 Snowstorm of Sandy had hit us.
After Sandy had made her grand finale, life went on, and then came Emergency Visits, Outpatient Appointments, and knowing every nook and cranny in Children's Hospital of Philadelphia. Just as we were getting settled at home, Niko started having (so we thought), Colic. But sure enough, that Colic turned into Tet Spells. The ugly purple, hard to breathe, scary as hell, Tet Spells. So then our little world traveler made his way back to CHOP ER.
Oh, CHOP. I just can not sit here and wonder how on Earth we made it through these six months. The surgery date seemed like it would take forever, and the admitting process seemed like it would never happen. The teams, the monitoring, the 'bitchassness' that Mom and Grandma Sharon gave to the nurses just sitting there at their desk, and of course being put on hold while most of the hospital staff was away for Thanksgiving weekend.
It is hard to believe that just five months ago, all hell broke loose. The memories are so fresh in mind that it feels like just yesterday, yet the actual moments feel like it was so long ago. If that makes any sense, at all. Being in the Ronald McDonald House over those hospital stays was a life savor. Meeting other Tetralogy babies and moms from all over, having others around that became part of our daily day. Sitting and eating dinner with all the other families and sharing our hardships and joys of the day, and most of all becoming one big family and becoming life long friends.
From the delivery, to the ventilator, the incubator, the bassinet, to the crib. To the hospitalizations and the Ronald McDonald House stays. To being a case study. To going back and forth to chop for outpatient appointments in which are countless. To all the routes to Philadelphia, Jersey Shore University Medical Center, Pediatricians, Children's of Hamilton, and NOPCO being memorized and programmed in my head. To the miserable helmet, and the horrid teething. And of course; to the smiles, laughs, babbles, giggles, and happiness on his face.
The days are going by so quick, and I can not get over how big he is really getting. He is truly the happiest little baby to be around, and the laughs are endless with him. I can not believe he is going to be half a year on Monday, and I can not wait to experience him rolling over, crawling, walking, and talking. I'm sure it will all happen way too fast as every other moment has just been flying by.
Happy (almost) 6 Months, Niko! <3
Niko's new sunglasses from the easter bunny! ( you can click the picture to make it larger )
Happy Easter Everyone!<3
Easter Bunny = SUCCESS. Swung by to get his picture taken after his outpatient PT today.. suuucchhh a happy camper. :) Until tomorrow, when we have to go to East Brunswick to get his stupid helmet refitted/fixed. The happy camper was helmet-free today ;)
How many more weeks left?!
About ready to take this helmet off him and throw it... or burn it and never use it again. Niko is m-i-s-e-r-a-b-l-e. It bothers him so much, and not to mention his little teeth are making their entrances and are killing him. & On top of THAT&THAT, we woke him up for our 7:30 appointment w/ his orthotist and then his PT just left the house.... He is so overtired. The whining and tears just won't stop coming... and there is nothing I can do except let him ''cry it out'' .. which BTW never works. Think I'm just going to go cry along with Niko soon... I want my happy little chub back. Common, Niko!! It's almost time for our afternoon cuddle and the Ellen show! Maybe once Ellen starts, he'll be happy again. ;-)
Relaxing Day After All ;-)
Ahhhhhhhh.. First Niko's Home PT rescheduled and just now his home OT rescheduled. A day with NOTHING to do! Hmmmm, what should we do first ?! ;)
Thanthan <3, My little Easter bunny!
Ah, adorableeee!!<3 If only I could get Niko to stay that still and not kick all the eggs out of his basket... LOL.
& Helloooo Philadelphia !
If only it was a skip& a hop... Here we come CHOP. Not an emergency though, Niko has an appointment with one of his specialists. Such a beautiful day for the drive though!
What baby looks good in a cranial molding helmet?! None. So bye bye white clinical helmet... Helloooooooo Cute Aviator ;). All credit on this helmet goes to Niko's Grandfather. The strap of the helmet has my touch though. <3 If anyone's baby needs a helmet and wants theirs painted, message me!
He would be glad to do it! :)