Needed to cheer up-catching up on old and new pics Cam!

Enjoying his late night snack at La Stalla





Angel baby


Big fat feet on kitchen table


Cameron not enjoying his matching onsie


Brody coming home from hospital last time


Handsome little monkey


Body beautiful


Moobies!


Laughing with mommy


Cuddles


Crack


Loving Julias toys





Hanging with his cuz a few weeks ago

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Brody now has a fungal and a bacterial infection in his blood. I did one of my 48 hour sleepover marathons this week when things got scary again. Yesterday this poor baby was put through so much. Because of the fungal infection they have checked all of his organs to make sure nothing has settled in them. He had an echo to check his heart, ultrasounds to check his belly, lungs, kidneys, bladder, spleen and pancreas and all of the big veins and arteries. He had an eye exam to make sure nothing made its way to the retinas. He then got a spinal tap to check his cerebrospinal fluid. On that test they saw the pressure in his head was double what it should be so he went down immediately for a brain CT. After all of this he had his central line (port where meds,fluids and nutrition go in and blood is taken from) pulled as is was infected an a new one placed in his chest. Infectious Disease is here constantly monitoring and Immunology has been thrown into the mix to observe for metabolic disorders. There is no speciality that has not been involved in some way in Brodys care. All of his tests were to determine if any damage had already taken place. Everything has cone back clean so far. Now we have to work on clearing his infection out of he blood so that we can keep all of his important parts in this condition.

Once I got home after 2 days of no sleep and not seeing Cameron of course I lost it this morning... And so did Brett. We are exhausted in every way possible.


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Too dark to watch... Just listen to his beautiful song. This is how we wake up every morning at 5:30am.

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Brody looking like Brody again : )



Cam making a mess with his peas


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Sleeping at La Stalla while mommy and daddy attempt to have their first dinner out.



Dancing with daddy



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One tough ass kid

So it seems like we have turned a corner. Brody is handling his ventilator weans and yesterday they took him off of the paralytic ( he was in a medically induced coma for a few days). He is slowly being weaned from his sedatives but still pretty much zonked out. His swelling is almost completely gone and his coloring is back. He looks like my Brody again. Expectations are constantly changing... Last discharge we thought he would be off the vent in a matter of weeks... Now we are just happy he is alive. My kids are the roughest, toughest there are. All you big kids better watch out for when Brody and Cameron catch up!

I'm baaaack!!!!



Cameron's bro-hawk



Always chowin


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Brody hospitalized

After an amazing week of playing, growing and settling in Brody experienced rapid changes. He had a low grade fever at home and we were encouraged to use Tylenol and wait a bit to see if it would go away. By the morning he was 102.4 and very aggitated. On our way to the Pulminologist's office he dropped his sats and when I looked in the rear view mirror to see him it looked like he was going into seizure. We quickly rerouted to the ER where they worked on him for an hour and a half. He was sent back up to ICU where they know him very well. He has an infection and went into septic shock. He is so swollen he is inreconizable. He is having issues with perfusion so had an all over blue hue. We had a hard time getting a pulse in his right foot. He is in a very guarded state. We don't know what happened or how this happened but it was quick and mean. I have not left his bedside and have been living at the hospital. Please think of our precious baby Brody.

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Reunited

Brody doing tummy time at home!!


Sorry Cameron that I put you in those horrible pjs


Look! I have two!


Brodys Mohawk


My tattoo for my miracles!!!


My mom reading a sophisticated publication while waiting go get inked! Ha!


A guy named Schlak listening to death metal tattooing my mom. Hysterical

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Branded for Life

So much has gone on since the last time I blogged. Brody has made a lot of progress but will still be coming home on extra respiratory support and hooked up to all of his equipment at all times. It's a TON of stuff to carry around to move him through the house or to take to doctor's appointments. He is scheduled to come home Tuesday and will be transported here by ambulance. Of course Cameron gets sick this week! It's hard for me when he doesn't feel well eventhough it's probably just regular baby stuff because I'm so used to him being my "healthy" kid ( a relative term with them). He usually balances out the equation. So hopefully he will feel well enough to bring Brody home into a germ-free house on Tuesday.

Staffing our nursing makes me want to rip my hair out. The thought of having people I don't know with me 24 hours a day in and out makes me want to rip my hair out. I'm anxious about them being here and having no provacy but more anxious about not having them here when my insurance knocks us down to 16 hours a day in 2 weeks. I'm sure we will be settled at that point and I will be begging for them to give us some space but it's still scary. Brody started eating by bottle again so we alternate bottle and g-tube feedings. He is so much happier since he gets his beloved bottle!

Its going to be so crazy to see Brody and Cameron together again, rediscovering eachother  :  ) I hope Cameron keeps his fingers out of Brody's trach! Oh how the concerns of a mother of sick preemies differs from that of most others...

Brody is 10lbs 12 oz and gaining. Hoping to see 11 lbs before he gets discharged. I'm sure Cam hasn't gained any weight being sick this week as he has been puking most of his meals and I am limiting his intake.

Cam saw the eye doctor who confirmed that everything still looks good in there and maybe glasses/contact lenses in 6 months. His vision therapist (who is one of the most wonderful, inspiring women I have ever met) is very encouraged and pleased with his progress as are Brett and I.

In conclusion...the summer leg of Cameron's World Tour 2011 is on hiatus until his brother can join the band. If you thought we were hard to get a hold of before... I have a feeling things are about to get even crazier than we have expereinced yet. Please stay patient with us... there WILL be a day when we can get out more easily, safely and freely. We miss everyone and we are counting down the minutes until Brody is healthy enough to join all of the festivities outside of the hospital/house.

In all of my free time I'm squeezing in a trip to Deep Six tomorrow night for my first (and only) tattoo. I am the last person anyone would ever think would get one but I found something I love in s discreet spot that is for my babies... I tear up just thinking about what this tattoo means for me. To brand their fight on me... to maybe experience the smallest fraction of the pain that they have endured. This has changed us all for life so I see a permanent reminder that I can wear with pride fitting.

                                                    Cam's baby sunglasses...not mommy's