Friday, November 2, 2012

Happy 2nd Birthday Brayden Thomas!

I can't believe my little man is TWO! I seriously have no idea where time has gone! It's been a whirlwind of a year and he's growing up way too fast.  Happy Birthday Handsome!! I still see you as my little miracle baby we worked so hard for!  I love you!!!

Brayden's 2nd year appointment was postponed because of hurricane Sandy so I'll have to post those stats later.  Brayden has a wonderful birthday spent with close friends and family!  We did a Halloween theme party this year and he had a great time! The kids dressed up in costumes and we had trick or treat buckets for favors. Everyone was so generous and he was spoiled rotten. :)  

Since so much has happened in the last year here's some highlights of the ups and downs and all about Brayden!

* Brayden Became a big brother!! I was a little worried about how hard the transition would be for Bray when Bella finally arrived. Of course the first month was tough with some extra meltdowns and bad behavior but overall i think he did really well. Most importantly he didn't take anything out on Bells. He was clearly upset with us but has always been great with her. When she is sad or cries he will give her hugs and kisses and rubs her head to make it better. He's really such a great big brother. I can't wait to see these two grow up together. I'm sure we will have our share of not sharing and typical kid fights but all the memories they will have together will make up for it! 

* And the diagnosis is..... PFAPA (Periodic Fever, Aphthous-somatis, Pharyngitis, Adenitis). PFAPA you are the bane of my existence! At 13 months Brayden started having un-diagnosable fevers. They were cyclic coming every 3-4 weeks, lasting 7 days with fevers running 104-106.7 degrees WITH meds. Scary stuff. In February the fevers were out of control. We were dosing him every three hours alternating tylenol and advil and nothing would keep the fever under control. We had already had strep test, urinalysis and an x-ray to rule out any kind of pneumonia. We ended up taking him to the hospital three times that week. We first tried Virtua but they weren't much help. The next night the fevers were even worse and we took him to CHOP. They did a repeat urinalysis and blood work and weren't able to find anything so they sent us home. Two days later the fever was 106.7 an hour after meds so we took him back to CHOP. This time they did a wider range of testing to include bacterial and viral panels. Since the dr.'s would always say "oh it's probably viral" they wanted to make sure. He ended up being admitted with an IV in with his "big bird" arm.

 In the end all of his tests came back clear so they set us up with the specialist because my suspicions that he had PFAPA looked much more likely. The immunologist was great, thankfully all the genetic forms of Periodic Fever they tested for all came back negative and was officially diagnosed with PFAPA. Pfapa is when the fever switch is essentially broken. Its when the body creates and inflammatory response with OUT the presence of bacteria or viruses.  We started a treatment plan that includes him being on Cimetidine 3x a day and a super dose of prednisone at the onset of fever.  Thankfully the Cimetidine treatment has been increasing the time between episodes.  he went from 3-4 weeks to 44 days, 64 days then 9 weeks.  It's great they've spread out but when he skips a fever he still seems to get the aches and is miserable.  It's tough not knowing when his never fever is coming but I'm glad they're not so close. The prednisone is suppose to break the fever and shorten it. So far it's not doing that. One of his fevers was only 5 vs the 7 days but I don't know if that was b/c of the steriods or not. At his last follow up we also started him on allergy meds. He has allergies but meds like the Singular he is on have been shown to help reduce the inflammatory response so we will see. I haven't noticed much of a difference.

 We follow up in 4-6 months which puts us to Jan-Feb so we will see. I'm praying this winter isn't so bad. Having a compromised immune system can increase the intensity and frequency in PFAPA kids even though it's not viral or bacterial related. I just feel so bad that he has to go through this. Leave it to my kid to do things difficult.  It's so hard on him to go through the episodes. His mood dramatically changes before the fever, then it's a week of fever, chills, aches and pains and then it takes him almost a week to recover.  It kills me and breaks my heart that we have no control over it. I just pray he outgrows it sooner than later. They say they usually do by 10 but I'm hoping it's well before that.  

* GO GO GO! I  think he seriously says this like 30 times a day lol Brayden is obsessed with anything with wheels, cars, trucks, diggers you name it!  I love when we are driving and he sees trucks or construction vehicles working and get gets so excited!  He's also turning in to a back seat driver lol When we are at a red light he loves to yell GO GO GO when it turns green. At least it's another chance to practice colors. lol 
Sacrificing bella to the car gods?? 

* Books are his favorite! He loves getting new books and reading. Right now he's obsessed with his "It's a Great Pumpkin Charlie Brown" book that his grandma got him for Halloween. The fact that it makes sound effects is a double win. I love watching him on the monitor "reading" books to himself in his crib. And YES he is still in the crib, but he loves it and hasn't climbed out so we haven't converted it to a toddler bed yet.  lol  But he does use his love of books to procrastinate when it's bed or nap time. He will want you to keep reading him one book after another just so he can stay up... too smart for his own good :) 

* Brayden sucks as sleeping. I know that sounds harsh but he seriously still wakes up at night. He has probably MAYBE slept through the night 25-30 times in 2 years.  And when I say he wakes up I mean most nights he is in hysterics and crying. Most nights its only once but on the nights when it's more than one time it's tough.   I think we are kinds use to not sleeping but adding a newborn to the mix made it tough. Honestly we REALLY lucked out b/c bella came home from the hospital sleeping 4-6 hour stretches and then even longer in the weeks after. She must of known we needed a little bit of a break.  So for now we spit kid duty, jason takes care of Brayden if/when he wakes up and I take care of bella since we are still breast feeding.  I really don't know why he wakes up and hysterics break my heart! A lot of the time he does ask for milk and honestly it's just easier to give him some and he calms and goes to sleep. I'm sure that's not helping but during fever episode times we encourage him to drink even if it's 3x at night just to keep him hydrated so it's kind of become a catch 22. Fortunately he is a good napper most days so I'm hoping we can break his habit and get him sleeping better. 

* Bray had the most contagious smile and laughter. You can't help but laugh and be goofy with him, he is so much fun.   He has such a tender heart. He will occasionally jump up and hug and cuddle with you, even though he is always on the go. Its those moments that really make your day and make the tough times more than worth it.  He loves to run up to you and "tickle tickle" or growl and try and scare you. He cracks me up! how can you NOT love that face!  Speaking of that "face" he is such a manipulator. Apparently he's just like me as a child, he will intentionally give you the face to see if he can get what he wants... such a little stinker!

* Brayden LOVES music and dancing! He loves "dance" and pop music the most but will rock out to anything from Linkin Park to Michael Jackon.  He has some of the funniest and cutest dance moves. I love it!! Right now his current obsession is "Gangnam Style" He even tries to the do the dance.  It is PRICELESS!  

* Tantrum king! I love my son but man he throws the most EPIC tantrums. He is a very strong willed and independent and emotional person, which is great at times but when it comes to toddler tantrums it makes them 10 fold! I have tried EVERY approach to how to deal with them. Needless to say some times he really can test your patience.  I know it's the age and everyone says 3 is way worse so please wish us luck lol.  His latest thing is the word NO! And he's been saying it for everything and its in that nasty obnoxious way that every parent just LOVES lol. We are working on that one! We definitely don't let him walk all over us and he will learn to be respectful even if he doesn't like it ;) 

* Brayden loves being outdoors, well i don't know many kids that don't but he really loves being outside, running around and discovering his world. We've had all kinds of fun little trips this year to the parks, farms, beach ext, hence the million pics I post lol.  I felt awful while I was pregnant and was stuck on bed rest but we managed to get by. You can definitely see a difference when he doesn't get to run around and play and get all of his energy out.  He definitely keeps me on my toes! I think I'm in trouble when both kids are mobile!! 

I could seriously go on all day with memories and all the little quirks and things I absolutely love about Brayden and his personality. But I think this has been long enough so here's to another amazing year filled with love, hugs, kisses and memories! 

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