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Saturday, March 1, 2014

Wow it's really out!

So my typical excuse that I've been too busy to blog is valid but not my primary reason this time. I guess I have just been scared to put it in writing. I had plenty of time while we were in the hospital undergoing a battery of tests and then just kind of hanging out being monitored but I restrained the urge to share in fear of not making it to the next step and then having to potentially share a failure. I felt good after they capped his trach the first night and monitored his sleep because I felt like breathing around the trach while capped was probably harder than breathing without he damn thing in the way (which would be the next test). So when we woke up after our first successful night and the team showed up to tell me it was coming out it finally hit me... This was really happening... This moment I have been living, breathing, fighting for the last 3 years for was here and we were finally the deserving recipients of an amazing life change. This was heavy.

All of the talk, tests, hopes, disappointments, new hopes, etc all lead up to this moment. It was pretty anticlimactic actually. We simply took it out like we do every two weeks when we change his trach except this time we replaced it with a cute little ole band aid. This invasive, terrifying wound they sliced into my baby's neck 3 years ago...and now an Elmo bandaid??? I wish it was just as easy to erase the post traumatic stress disorder, anxiety and other strain all of this caused in our lives but it kind of worked the opposite for the rest of us. To me, when Brody's trach came out it was like ripping off the bandaid on our lives instead. That huge one we had used to hide under. We allowed those little pieces of plastic in his body to manifest our own baggage and fears around the boys conditions and allowed them to be excuses to lose ourselves.

The relief I felt the second we walked in the house without his trach- I can't describe. There were times I felt imprisoned by it all and now I feel so free to really live again. Brody's response has been amazing too. Even though it's all he ever knew-I think he always knew that he didn't need it forever. He has had so much energy and no inhibitions about him and he is the kid we always knew was in there being concealed by his conditions. He is b-a-d!!! And we love every second of it. He loves being thrown around by his daddy who now can do so without worry about devices falling out or hurting him. He loves cartwheeling and wrestling with his brother. He loves sleeping without equipment and being able to ride in the car without a back seat escort. He has the freedom to be a kid without a nurse all over him restricting his every move.

By the way, he threw it in the trash can himself.

We have a long long battle with voice ahead of us... And feeding is still no walk in the park! But for now I'm just taking it all in. I feel like at 3.5 years old I can finally be their mommy and not their nurse or their therapist. I can take both of my kids out without an escort and be alone in my home with them and play and be silly or just snuggle without an audience or interruptions for meds and treatments. As elated as I am about this sometimes I also get sad about how much I missed out on while they were sick and in and out of the hospital while everyone else was having these normal experiences with their kids. We are making up for lost time though and every day is something new.

I am beyond lucky to have both of my kids alive and as well as they have ever been. I don't take a second for granted.

My blog has come to have quite the following. Knowing how many people tune in to hear updates and cheer us on has kept me going on some of the worst days. Without feeling that accountability to all of you I wouldn't have felt like I needed to write new entries and without this outlet to vent and document this process I would have lost it a long time ago. Thank you for your support and love.












































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Tuesday, January 28, 2014

A letter to Brody


Dear Brody-

For the longest time people would say "thank gd they won't remember any of this..." And here we are at 3 1/2 years old still going through it and now I fear you might. You have overcome so many miraculous obstacles because you are so determined, proud and smart. There has been so much in your life that has been out of our control but I always fought those forces to find the answers and bring you back. For the first year of your life you continuously, time after time came very close to not making it but mommy never left your side and we were vigilant, creative in our treatment recommendations and aggressive advocates for your best interests.

We have come so far and you have developed into such a funny, little voiced but big personality kinda kid. We thought we were at the end of the road and putting all of this behind us by getting your gtube out and scheduling your trial to get your trach out but we should know by now go expect the unexpected with you. Nothing seems to come easy to those who deserve it most and you definitely deserve to catch a break already. A bump in the road sounds so cliche and for the kid having yet another surgery, having a MRSA infection rip apart your surgical site, get his fresh incision barbarically torn open without any anesthesia let alone pain meds and gtube shoved back in, a whole bunch of traumatic stuff in the middle, and now another more invasive surgery-the saying is more like a crater on a highway.

Living your life in and out of hospital after hospital, rehab facilities and being poked and prodded as long as you have been alive has not been easy on any of us. I just want to give you the normal life you and your brother deserve and to put this all in the past. I don't do much praying anymore (but can always use he help from those who are strong believers) but my wish for you today is that tomorrow goes smoothly and your wound will finally heal, and you can have that belly we've been talking about for weeks now... Just like your brothers. My dreams and prayers for you are constantly changing and I hope that by next week our focus is on our next big accomplishment of decannulation of your trach and this is old news.

To those of you with sick children (and unfortunately I know too many), only you can truly read between the lines of my entries at everything else that goes into these non-stop procedures and hospital stays that torment our babies physically and emotionally scar and rip our hearts out.

Brody, I really believe you are destined for big, huge, pay it forward kind of things in your life. I think that at your very young age you and your brother know very well how much you are loved and how hard your mommy and daddy will fight for you. When you hug it's hard and with solace and gratitude. We have always said you have the eyes of an old soul and even though you are unable to speak the words I know you get it all.

You guys are my life and I love you so so much. Wear each battle we have been though with pride because at 3 you are tougher than anyone else I have ever met.

Friday, January 17, 2014

Lots of pain!



Little guy is hurting but laying in bed watching lots of TV and ipad time! Cameron just wants me and to be near his brother.

Hopefully he will be feeling better tomorrow

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Plastic out



So glad to be done with this thing!!!




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Going home soon to cuddle with my brother like this




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Bye bye button


Tomorrow (well I guess officially today) is the day! 6am arrival time will have me up at 4:30am to do his treatments and get on the road. Hopefully in early and out early though. In with a hole in his belly since 6 months old, out with a beautiful incision closed with Dermabond.

Very exciting stuff. I remember when he had to get it in-- I had no idea the other horrible things we would encounter so having a hole in my child's stomach seemed like the worst thing possible. I remember thinking he would only have it for a few months until he got bigger and could eat more on his own... 3 years later it is just now coming out. When he went septic and was in a medically induced coma when we also lost him... We were grateful he had the gtube. Once he got bigger and better he began eating on his own but we kept it in case he had any complications with his tracheal reconstruction. It's been in his belly unused for over a year now just annoying him and leaking and irritating and FINALLY that yucky thing can come out!

I tell him his belly is going to look just like Cameron's and to say bye bye to his button. He waves to it and understands.

They just came to get him and he screamed for mama and reached for me- never gets easier but it has to get done.

The beginning of a whole new kid...




Relaxing with KiKi before


Waving Bye-bye gtube!



Feeling real good with some drugs on board


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Friday, January 3, 2014

This winter has been rough on us


Poor immune systems and stress don't go very well together but fortunately Brett and I have bearer much of the burden and the boys haven't been too too sick. Right now they are feeling pretty yucky but still holding up great on all the other stuff that would have gone on hold in the past because sickness trumped therapy, feedings, or making them do anything that they didn't want to at all. Even through colds and flus they continue to make big strides every day and grow into very cool funny little guys. Cam's conversational skills are fantastic- he is a little parrot and makes me laugh so hard sometimes. My biggest battle with him right now is convincing him that he is in fact a "big boy". He tells me he wants to be a baby and he wants to be 2 again, not 3. I know the feeling kid! We tousle everyday with drinking from a straw versus still wanting that damn bottle! And we had a good 2 weeks of complete nakedness because he cried about underpants instead of a diaper. Thank goodness were back on track with the undies and very slowly making it closer and closer to the potty with our pee pees. I would say 2 in the toilet a day, about 100 in our pants but were still making progress. Change is extra hard for Cameron but I am so proud of the limits he's allowinge to push him. Brody is the potty champ. Pretty much completely trained with a few accidents here and there. Wow- what a load of my shoulders-literally! Feedings still suck!!!! It's my most hated time of the day but if I take a moment to reflect on where we came they have still made great strides. I just wish I could hand them a damn chicken nugget and they would devour it just like other kids their age. I dream of the days of independent eating of solid foods!!!!!! Cam will only eat Mac n cheese these days (orzo with Greek yogurt and cheese whiz) and strawberry pudding. Brody will eat anything I blend up but I wish I could offer him more options...
I feel like he's so sick of eating puréed foods ( not nearly as sick as I am of making them however) but he just won't chew other foods enough to swallow them. We'll get there eventually just like we have all the other things I have feared my never happen but I just wish their development in this area was a bit more proportionate to all the many areas they excel in.

On to fabulous news- Brody is getting his gtube out on January 17!!! Needs surgery to close it up properly but he has had it since he is 6 months old so this is a huge victory. If all goes well the next few weeks and he continues to stay strong in fighting off all these bugs and viruses going through my house then we are hoping he will be admitted for a few nights in March for monitoring and if he passes their challenges he will come home with no trach as well! We will find out more in a few weeks on this...




You're 3 year old doesn't eat caviar??


Just looking studly


Adorbs that Children's Museum in New Hope


Snow bunnies


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Wednesday, December 4, 2013


Cam saw his retinologist today- the man who saved his vision when he was just days from being completely blind. Dr Kaiser sees him only once a year now (he sees several other eye specialists much more often). For being such a practical and seemingly stoic person the sight of Cameron brings him close to tears every time. I can tell how proud and relieved he is to see how functional Cameron's vision is when there was a very good probability of much much worse of a visual outcome. He just blows him away every time. Other than needing 3 grown adults to restrain my kid and pry his eyelids open it's a nice "perspective moment" to step back and be reminded of how far we have come an show lucky we are.

Ran into the neighbors and boys best buds going to see the lights at Feeneys. They're all too cute together.



We transitioned his head garments to underpants from pull ups as well- potty training SUCKS


Gaga's new pup and Cam's new best bud "Cutie"



Boys are showing that potty who's boss! I don't know about one of these infamous "3 day potty trainings" but it seems as if there is more pee pee getting in the potty and less of it on my floors every day.

Brody's next big airway clinic appointment is Monday so we're anxious to hear the newest plan to get this damn trach out. Voicing is coming along very very slowly. Still just sounds. Every time we work together on it my heart breaks that he can barely project sounds but I have to be patient with this just as we have been with everything else and trust that it will come around.


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