Bennett's True Bestfriend

To me you're more than an Uncle,you're truly a great friend.

Someone I could pour my thoughts out to

knowing you'll cherish them to the end.

You've made me laugh,when I wanted to cry.

You've made me stronger,when I felt so weak I could die.

Whenever I'm upset I know you'rethere with a shoulder to cry on.

Whenever I face a problem and need some helpI know you are one I can rely on.
You've always made me happy,I hope you can truly see.

You're more than just an Uncle,you're also a great friend to me.

Dear Uncle Bubbie,

I just wanted to tell you & the whole wide world how much I love you! You mean so much to me! You are always at my bedside when I am in the Er, Hospital and go to every doctors appointment that you are able! You have taken many ambulance rides with me! I love our little sleepovers in your bedroom! You are so snuggly eventhough you hog the bed! I may poke you in the eye or just kick you but know I am doing it out of love! hehe I am so lucky to have an amazing Uncle like you! You are the bestest Uncle in the entire universe! I love you!

Love Your One And ONLY Niece,

Bennett

x0x0x0

Just A Few Thoughts! :)

You know as I sit and surf my Facebook newsfeed, I often see people belly aching, complaining, whining, whatever you want too call it. It bothers me because why complain? Their lives could be a hell of alot worse than what it is. Suck it up and move on! Has anyone ever seen on my Facebook posts ever say FML, Oh my life sucks, I hate my life? No, I didn't think so!


"Oh my kids are not listening! All they want do is fight with each other!" -- Well, take a damn step back & count your blessings! Your children are able to have brothers/sisters to bicker with. Is it such a hell that your kids aren't listening to you today? I would do anything to have my biggest worry day in and day out to be "Is Bennett going to behave today or is she going to just act like an animal?" That by far isn't my biggest worry! I wake up each day worrying if my daughter is going to be able to breathe "normally" ALL day long! I wake up worrying if the pharmacy will be able to fill her prescriptions on time without a hassle.


"FML" -- Seriously, how can your life be so damn rotten that you have the need to post "FML" after every post? If you hate something about your life that bad, why not take the steps to change it??


"OMG My kids are getting on my nerves" -- How can a child get on someones nerves? You know what? They are just being kids! I am sure you got on your parents nerves as a child! Once again feel blessed that your child is able to "get on your nerves".


" I sooo need a break! I cannot wait to go out and party it up!" -- Wow! This one irritates me so much that I just want to shake people up! When you became a parent, it isnt like applying for a 9-5 job! You don't get two 15 minute breaks and a lunch hour. Being a parent is a 24/7 job. I go out once in awhile for maybe an hour or so for adult interaction but it isn't a constant thing. There isnt a problem with going out with your friends and having fun. But, don't put partying and such before your children.

I am a Mother of a child who spends countless hours in the doctors offices, weeks at a time in the hospital, hours a day taking therapies and many many prescriptions a day just to be able to breathe. I would give anything for a cure for my baby.

I cannot begin to imagine how a parent can walk out of their childs hospital room and never return until they are discharged. There are several children here on Bennetts floor without family or parents here with them. It makes me want to cry! As I walk by their rooms to go get something for Bennett, I peek in and there they sit all alone in this big scary place. When your child is in the hospital they need you then more than ever!
Yes, Bennett looks healthy & "normal" on the outside but cut her open and take a look at her internal organs. People want to say negative things to me for allowing my child to do things. You need to brush up on your CF education before you ever criticize me for allowing my child to do something that YOU feel she should not do! You are not her parent, I am! She has me! I am her Mother! If you do not like the way I am parenting my child, keep your damn opinions to yourself. Once you walk a foot in our shoes, then you have the right to judge & criticize.


"I don't know how you do it" -- I do it because I have to do it. This was something that I had no choice but to do and it is a blessing. It makes me cherish life so much more. Every second spent in the hospital room with her is the greatest thing. We have a bond like no other. We are bestfriends! She is my life! And she knows it.


I may not have alot of money. But, money only gets you so far. My daughter receives all the love in the world and that is all we need to survive.


When I see kids in a store throwing fits and being ungrateful for the things people buy them. Being selfish saying they want, want, want. Bennett is very grateful for everything she has. She says "please & thank you" when it is necessary.

We do not celebrate her birthday as just a birthday party. We celebrate it as another year we kicked CF's Butt and as another year we were blessed to be able to spend it with her! We do celebrate huge & throw her big birthday parties because we do not know when the last party will be. I have had such negative feedback on how huge & big her parties, Christmas, Easter and such are. But, this may be her last.


For the people who are unaware Mark & Lisa LeMay PROUDLY & I mean PROUDLY took on the role of Bennetts godparents! They love this baby dearly! She is their everything! As well as Chad, Haley & Andrea.


Bennett is a cheerleader, gymnast and soccer player because she wants to do it. I refuse to hold her back because she has Special Needs. I will never limit her as to what she wants to do as long as it is okay for her health!


*** This blog isn't directed to anyone in particular, it is just a few things that have been on my mind and I needed to get it off of my chest ***

So We're In The Pokey!

For those you you who do not know Bennett is currently admitted into the Children's Hospital Of Philadelphia, since they are unsure what the cause of the fevers, cough and shortness of breathe, they have admitted her for Cystic Fibrosis Exacerabation -- which means An increase in the severity of a disease or in any of its signs or symptoms.


It all started back in January when she had the simple sinus infection symptoms of congestion, nasal drainage, fever, sinus headache and earache. So, Dr. Rubenstein (new CF Doctor) decided to put her on Bactrim for 21 days! She started the bactrim on February 1st and 15 day into it she had taken a horrible turn, her fever was really high, the congestion was worse and the breathing was just unreal. So, I had taken her to the ER -- her favorite nurse who we all love was there (Tana). They ran tests and everything came back negative (RSV, Influenza A&B), Chest x-ray was normal and her bloodwork showed elevated white count and to follow-up with her pediatrician the following day. So, that we did. When we were in his office he did an exam which he discovered she was having wheezing in her upper lobes of the lungs and crackling in the lower, more so in the right than the left. He said to continue the Bactrim and call Dr. Rubenstein. We left his office and I called her CF Clinic in Philly. He decided to put her on Cipro for 14 days and that his nurse would call me in 4-5 days too see if there was a change for the worse or better. Day number 4 on Cipro, things took a horrid turn. She had a fever (lowgrade) and she was suffered with the simple task of breathing. Carrie the CF nurse called the on-call fellow and she immediately wanted her admitted as soon as she heard the word "cough". I was instructed to take her to our "band-aid" station and have them call her so she can tell them what to do and transport her to C.H.O.P. So, around 4:30 (after stalling so the EMS crew that would be transporting her would take excellent care of her -- Thanks Adam & Justin, also Ally for giving me the advice).

After spending 4 grueling hours in our "band-aid" station and witnessing a three ring circus, they called up FAME EMS to transport her.

So, we arrive at C.H.O.P

Day 1 -- which was a hectic mess trying to take it all in here. We have learned things over the past 2 days that are upsetting. Basically, the only two doctors that have been caring properly for Bennetts case of CF are Dr. Dedeoglu & Dr. Severs (pediatricians at that) -- I give them my respect.

Things we learned on Day 1 that made my blood boil:

1 -- For the past 2 1/2 years I was being taught the improper way to give her airway clearance.

Dr. Kinsey had me only giving her the vest 10 minutes twice a day and increase as needed. In Bennetts case she needs 30 minutes 3 times a day. Well isn't that just dandy that airway clearance is the biggest thing in a CF'er. Her vest will now be given 30 minutes 3 times a day. Oi! This is alot to adjust too.

2 -- She is possibly has CFRD -- Cystic Fibrosis Related Diabetes. They are checking her sugar before each meal, 10pm and 2 am. So far they have been running on the higher side. They will be checking this for 3 days and then making a decision for treatment


3 -- She is slightly anemic. Well hello! I never knew this! Her eyelids are whiter on the inside. Her platelets have always been on the lower side on most of her bloodwork they have taken. They will be speaking to each other and seeing if she will need an iron supplement or something else to aid with this.

4 -- In her old clinic notes it states that she always had trouble gaining weight and she is a little on the slower side of gaining. Excuse me? This is news to me! They always voiced to me that she was good with her weight and they were satisfied! She does go up and down often. She has been between 40-42 for the past 6 months. I do not think that is bad. Well this is where the dietitian had gotten thrown out and told to never come back. Do NOT argue with me that I knew she was having weight gaining issues because I clearly did not know.


Day 1 overnight -- She fell asleep around 5pm & I woke her up around 7pm to eat dinner since she is unable to eat until after her Picc Line procedure. She fell back too sleep around 9pm. They wanted to do a sugar stick at 10pm & 2am. The nurse told me to refuse the 10pm stick so she could get come sleep. So, well that is what I did! Doctor was okay with that. She sleep straight thru the night until 8am! (thanks do not disturb sign).


Day 2 -- She had her nebs & vest at 8am. She is now taking the rest of her meds now. Next dose of antibiotics is 11am. She has an hour of art therapy/play scheduled today as well as an hour of music play (Mommy will need earplugs). Then sometime this afternoon she is getting her Picc.

I will update after the procedure and let you all know how she is doing/did!

It is time to go play and be a "normal" kid in the pokey! Lots of painting, coloring, movie watching!

Have a good day everyone!!