Thursday, January 29, 2009

Vest time.......

Caleb fell asleep half way through :)

Wyatt on the other hand.....

Until next time...........

Wyatts 15 month well child check!

Well Wyatt had his 15 month wcc today and 3 shots :(.. He was not impressed to see anyone there! He fell asleep on the way so he was out cold through the first part of the appt. He slept through me undressing him and taking him to the scale! I layed him down and everyone was laughing that he was still passed out! I took it diaper off and all hell broke loose :).... He looked around and flipped out! He has never liked the doctors office and the trip to Barbara Bush childrens hospital didnt help the situation at all. Dr. H said he looked great! He weighed in at 26.6 and was 32 inchs tall. He actually lost a few oz. but she said considering the massive diarrhea he's had the past 2 weeks on cipro thats great! She said she would have thought he'd have lost a pd or more! His lungs were clear and she gave me a script to help his diaper rash.. He's had it for 2 weeks now and the nystatin cream makes it hurt worse. It is a yeasty type rash so he kinda needs the nystatin.

Until next time.........

Wednesday, January 28, 2009

You know you've been dealing with CF too long when....

I didnt actually write this but I think its so true :)

You Know You've Been Dealing With CF Too Long When ....

- You've used puppets, toys, sung, danced, pleaded and generally made a fool out of yourself all in an effort to get your child to eat.

- You've stockpiled enough applesauce to start your own factory

- You find loose enzyme beads literally everywhere, the car, your clothes, -the ceiling (not joking)

- You count more calories than sheep

- You add salt to everything and use butter as a general cooking base even when a recipe doesn't call for it

- You panic when your child sneezes

- Your child coughs and you immediately chant "Xopenex four times a day!"

- You check websites daily for news about a cure

- Your house has more medications than the pharmacy

- You've actually found yourself explaining a medication to the pharmacist instead of the other way around

- You've considered dying all your child's clothes yellow to hide the vitamin stains

- Your medical bills are looking more and more like the national debt

-You've prayed for your child to be fat

-You have a strong urge to smack whiny parents of "normal" kids

-You've actually found yourself exclaiming angrily in the grocery store upon discovering extra-cheesy mac doesn't have more calories than regular (sadly true)

-You know what the poopie dance is, and you've done it

-You've had long involved discussions with other parents about poop

-You've started referring to everything in acronyms (CPT, PA, MRSA...)

-You're seriously considering a medical degree, cause at this point you know more than most doctors

-You've reduced a complete stranger to tears by yelling at them not to touch the baby

-You can describe the hospital's daily menu in exact detail

-Purel and Lysol are your new best friends

-You've considered life-long quarantine for your child

-You've told someone off for coughing near you or your child

-You have multiple doctors on speed dial

-You refer to CPT as your child's nightly beating

-The pediatrician sees you more often than their own staff

-You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis

-You've cried over half a pound

-Your child comes with an instruction manual if you leave them with a sitter

-You've forgotten what normal is

-You find empty enzyme capsules in your pockets

-Your child wears a neb mask more easily than they do a hat

-Your child has started trying to do their own CPT

-You own every Baby Einstein video made and are eagerly awaiting more just for something different

-You've forgotten to put meds in the nebulizer and actually let it run several minutes before discovering the problem

-Your after clinic routine at home looks like a hazmat excercise

Until next time.....

Older Photos.....

Wyatt the snow baby early 08
Wyatt making a mess with cereal :)
Wyatt Glow baby! 07

Caleb sneaking in some lovin!

He is so Proud to be a big brother!

Until next time....

Monday, January 26, 2009

Wyatts 1st picc.. 11/3/2008

Mr. Wy checking out his 1st picc line Nov. 3 2008!


You have to start somewhere!

Well, Im not really sure how to start this.. I have had a blog before and I never really shared it. I ended up losing it somewhere in cyberspace :) Hopefully this one wont end up with the same fate as I think this will be a great way to spread awareness, vent and meet some great people.. I am married and have 3 great boys. My 2 youngest both have cystic fibrosis. Caleb is 7 and wyatt is 15 months. Caleb was diagnosed when he was 7 months old after being sick for a couple of months and failure to thrive. Wyatt was diagnosed at a month old. We had planned on having him tested anyway but when he wouldnt gain a single ounce for the first month of life, I knew in my heart that he had it too. Both kids are doing fairly well. Caleb currently culture staph and wyatt cultures staph and pseudomonas. Each of the boys has been hospitalized once. Caleb when he was 7 months was transported to barbara bush childrens hospital from his dr's office as he was having mild seziures and was lathargic. He had been sick with everything under the sun and his sodium level dropped to a dangerous level. Wyatt has had a tough go of it! He started with some weight issues, then caught a cold... then another cold.. then another... you catch the drift! It got to the point where I walked into the clinic and said something is up! Nothing is working and he is still sick! We decided that a bronchoscopy was a good idea and during that they found that he was culturing pseudomonas. He was imediately put on cipro and 28 days of Tobi nebs, but even after all of that he still had a nasty wet cough! Thats when it was time for wyatts first admission! He spent a awful week in the hospital! It took over a dozen needle pokes to land a temp. iv in his foot! Then about 36 hrs later he blew that line and another unsuccessful 9 trys to get another one in... Then he went under and they inserted a picc line (after another dozen failed iv attempts while under sedation) He was sent home for a week of iv antibiotics. Wyatt was good for a few weeks and then he caught yet another cold.. he is currently on cipro and this is also his Tobi month. So far he is sounding good so I am hopeful that just maybe these poor kiddos can catch a break!

I will try to get some pictures up when the kiddos are settled long enough to do so! :)