Bah Humbug!

Bennett && I were sitting here chit chatting while playing The Give Kids The World Version Of Candy Land.

Mommy -- "What do you want Santa to bring you for Christmas?"

Bennett -- "I want six sisters, one brother, a new doll, and a game!'

Mommy -- "So can your six sisters && your brother share your bedroom with you?"

Bennett -- "No, they can sleep in the garage, it has heat && we can take them food!"

Mommy -- "That isn't very nice Buggie!"

Bennett -- "Well Mommy you have my heart and I have yours!"

Awww that made me tear up! :0)


Okay -- Well I wish I had lots of good news to talk about! Bennett still isn't feeling very well! She has been on her TOBI for 24 days now along with 3 other oral antibiotics and it hasn't helped much. She has done a 7 day round of Zythromax, 20 days round of Bactrim && Just finished another 5 days of Zythromax on Monday.

I had her at the emergency room a few nights ago because she was having alot of pain in her ribs again and her breathing just wasn't right. The ER doctor said to continue with what Dr. D was doing and to call him or her CF doctor if she doesn't start improving.

Well this morning she woke up sounding very congested and full of gunk. Her nose isn't running though? She has a low-grade fever! When I have her blow her nose into a kleenex it is very greenish/yellow with hints of blood and she had an increase junky cough. So, I called and spoke to her CF Care Coordinator Judy && she said that her CF Doctor isn't in the office so another doctor is covering for him so she will speak to him and call me back. Well to my surprise Marie her respiratory therapist had given me a call back && said that Dr. Perez wants too see her in the office tomorrow at 1:30 && to pack her and I a bag! I am really nervous because she has never had IV Antibiotics or a PICC Line so I have no idea what to expect. From reading fellow CF Momma's experiences with IV Antibiotics it usually is around a 3 week stay in the hospital if not being allowed to come home and finish the IVs at home. Well tomorrow is December 1st and if she has to stay for 3 weeks that means she may have to have Christmas in the hospital. No Mother wants her child prisoned in the hospital for any holiday especially when Santa comes! Once Marie called my day has turned crappy. I cannot clear my head! I just want to scream or cry! I wish I could switch my babygirl lungs! It is time for my daughter to have a break. She has been sick straight for 2 1/2 months now! On a better note sorta, it seems like her intestinal issues are starting to work better. She has been going potty regularly! It isn't always hard. It is softer and she still has pain but I think thats normal! :0) Hopefully that means she is cleaned out! She has a GI appointment December 23rd for a follow-up from the change in her medications.

Please continue to keep her in your thoughts! I want nothing more than to have my babygirl at home in my arms where she is comfortable! x0x0

I am VERY blessed!

I Am Thankful:


First and foremost I am VERY thankful for my beautiful daughter that god has blessed with me. She is amazing and special in more ways than one! She is always smiling and happy no matter what her days are like. She is my world!


For the Cystic Fibrosis Clinic Team that takes great care of Bennett. Thank you Dr. Kinsey, CF Care Coordinator Judy Egly, Respiratory Therapist Marie Isenberg, Social Worker Diane McCurley, Dietitian Patti Chulock && the many nurses that work in the office.

For the GI Team that has been working extremely hard trying to get her issues figured out and fixed. They want to get to these issues figured out as soon as possible so she is not suffering anymore. Thank you Dr. Focht & his nurses.

For Dr. Dedeoglu, he is a very kind and caring pediatrician that doesn't stop until he gets good answers. He is always willing to help and ineract with her team of doctors in Danville who are over an hour away. The night she was born he called in every hour to check on her and was very concerned because she had meconium and from that moment I knew he was the best pediatrician for her. Thank you Dr. D for being the best pediatrician ever!

For ALL of Dr. D's nurses who truly love Bennett && try their hardest to keep her calm and happy while we are in the office! Carrie, Jennifer, Jennifer S, Nora, Dawn are all very sweet and caring. They know how to calm her down and reassure her everything will be okay! Thanks girls! (eventhough I got bit yesterday, J/k Carrie)

For the EMS team "the bitches" that we have had to call upon so many times for Bennett. They all are amazing && are wonderful! They were very kind on the transports from our home to the childrens hospital! Thank you for all that you guys and girls do! She may call you names but she is super thankful for all that you have done and will continue to do for her.

For the Emergency Room Nurses who love Bennett so much. As soon as they know Bennett is on her way or is in the ER they all come into her room and make sure she is feeling reassured that everything will be okay. They try their hardest to keep her pain free and happy while we are there. They also get yelled at and get sassed by her but she is also very thankful for everything you guys do for her! You take her fear into consideration and try your hardest to make her anxiety level as low as possible! Thanks!


For the very few wonderful people I call family! You guys are great! Especially Mark, Lisa, Chad, Andrea && Haley! You guys do so much for Bennett && I and I cannot begin to thank you enough! You guys are ALWAYS right there the second her or I need you guys! We love you guys so very much and are super thankful for all that you have and continue to do for us!

For all of my wonderful friends near & far! You guys are the greatest! I know you guys will be there at any hour of the day that I need you, even if it is just to talk! I know you all are a text or message away! Your encouraging words and support keep me sane in the roughest of time! Thank you!

For my amazing CF Family! You guys rock! Always to full of advice && support! Always willing to help in any way you guys can! Giving answers to questions and concerns that I may need! You all pull together and give me lots of information that I did not know about that helps with Bennetts medications and treatments! I would be so helpless without all of your support, advice and techniques! Thank you so very much! <3

For KaylaBeth Kreations for having Bennett as their sponsor child! For all of the things that you have and continue to do for her! They have given her so many great things too make her hospital visits and stays so much more relaxing and to keep her distracted. Also, this all wouldn't have been possible without Heather Duncan. Thank you KaylaBeth Kreations!


For being blessed to be able to stay at home with her! Being able to be a stay at home Mommy is the greatest job in the world. I do not want to miss one minute with her! She needs her Mommy and I am very very thankful that I am able to stay at home with her!


For my wonderful boyfriend Brad. He has been by my side through the roughest of times. He is the one that receives all my stress when I hit my breaking point. There are times when I take out the stress of CF on him and he truly doesn't deserve it but he is there to help && listen. He has been here for the past almost 4 years && knew coming into this that she was going to take alot of time and patience. He didn't ask any questions! He never complains or whines! I am very blessed to have an amazing and understanding boyfriend who loves Bennett && I unconditionally! Thank you Brad for everything you have done and continue to do for Bennett && I. I am truly blessed to have you in our lives! Bennett is a very lucky lil' girl to have such an amazing Daddy in her life! We love you!


I could go on all day long but I am going to go snuggle on the couch with my warrior princess && watch the parade!


Happy Thanksgiving everyone from our family to your! Sending love, hugs and happiness all the way from Pa! <3

Give Her A Chance

I have a child with special needs,
she is great yes indeed.
People may look at her in a different way,
but she's like any other little girl wanting to play.
She has Cystic Fibrosis, which she fights to breathe,
but she's still up for a nice long talk.
She likes to play with her puppy Libby, blow bubbles, color and play dress up.
But that is only some of the things that she likes.
At recess she walks with her inhaler in her hand,
it just takes her a little longer when the bell rings.
So please be patient and get to know a little girl named Bennett,
who wants to be loved so.
She is very sweet and loves to play,
so please give her a chance and don't run away.
She has feelings, just as you and I,
so please be nice and don't make her cry.
Try not to judge her because she cannot breathe like you do.
Just look at her heart and you both will have fun.
She doesn't look at you different or make ugly jokes,
because God gave her a special heart
and she doesn't want it broken.
So if you see it in your heart,
please let her have fun and be a part.
She's just a child wanting to play,
you can teach each other in different ways.
Just remember God made each of us different and unique.
I like green, you may like pink.
In God's eyes we are all the same,
so what do you say friend, how about a game?

Pseudo What? Pseudomonas!

Wow!, Where to begin... First off Bennett had surgery on September 28, 2010 to have her tonsils, adnoids and tubes removed! Which is typically an easy procedure turned into a nightmare and fight for her! I feel so guilty because it was my CHOICE to have them removed or leave them be! She had been having TONS and TONS of sore throats and ear infections so I opted to have them removed! If, I knew then what I know now, I would've chosen NOT to have the surgery! TWO days after her surgery she started spiking fevers between 105 & 106 with LOTS of pain in her rib care area! I took her to her pediatrician (well it wasnt her typical pediatrician) && he said it was viral that it'll pass in a few days to keep giving her tylenol for the fever. A week had passed and the tylenol wasn't breaking the fevers, they were starting to become more and more aggressive! I ended up having to take her to the emergency room on three separate occasions for IV fluids because she was dehydrated! One ER Visit she was diagnosed with a UTI and was told to call her pediatrician the next morning! So, I did as I was told and Dr. Dedeoglu did a urinalysis, bloodwork and chest xray. Everything looked great except for an elevated white count! -- At this point it has been 2 1/2 weeks of around the clock tylenol and motrin to keep the fevers under control and the pain at a minimum. They could not culture her throat due to her having her tonsils removed and they did NOT want to disturb the stitches incase they would knock them open and the infection would spread! -- Dr. D at this point was scratching his head along with Dr. Severs! -- Dr D. contacted the oncall CF Doctor whom ordered a culture! -- Well, it took a little persuading by me to get Dr. Severs to do it since he had never done one before he did not want to cause her any harm! But, he did it and it was done correcty without any harm done to her! Well the culture was taken on Friday. October 22nd and it took SEVEN whole days for the culture to stop growing and her CF Care Coordinator called me Friday the 29th and gave me the news that I did NOT want to hear! Bennett is growing a potpourri of bacteria in her lungs! I felt my legs becoming weak and my stomach starting to turn! This is the very FIRST time in 3 1/2 years that she has ever cultured anything! I felt so helpless and it was my fault for having her tonsils and adnoids removed! At this point she has been sick with a high fever, lung pain and dehydration for FOUR weeks and we finally have an answer. She is growing several different bacteria including pseudomonas! Dr. Kinsey put her on a high dose of Bactrim two teaspoons twice a day for 20 days and TOBI (an inhaled antibiotic) two times a day for 28 days! She started TOBI on November 3rd in the evening so she took one dose Wednesday, then one Thursday morning both doses she had slight complications. Thursday evening the 4th she took her 3rd and about 30-40 minutes after finishing the dose, she became to complain of chest pain, left arm pain and she was having trouble breathing. I immediately called the ambulance and they transported her to the ER. Her heart rate kept bouncing up and down! Between 118 && 162! They gave her a treatment of atrovent and it began to relieve her chest pain! But, before the ambulance took her from our home, she threw up a huge blob of mucous! -- She was released from the ER && her CF doctor called me the next morning telling me to stop the TOBI right away! So I did! We set up a time for her to do a dose of TOBI in his office under the supervision of the respiratory therapist. We agreed for her to go into his office after her GI Procedure Monday! -- We went up to the clinic around 1pm! They monitored her why doing the treatments! During the albuterol/pulmicort treatment her heart rate stuck steady around 119 and her O2 was 99%. But, during TOBI her heart rate was around 150 && her O2 was 92%. He said that the TOBI was working the way it needed to be and she should be fine! But, he wanted us to stick close another night at The Ronald McDonald house incase she had complications. So, that is what we did! She had no complications since that night the mucous plug broke off from her lung and got lodged somewhere until she was able to bring it out! -- She has only 8 more days on the bactrim but 21 more doses of the TOBI to take! -- Please pray that she is able to finish all 21 doses without any complications! And when she gets cultured on December 23rd that ALL the bacteria and pseudomonas are GONE! -- The one she cultured is VERY resistant to ALL treatments but sometimes TOBI can get rid of it with SEVERAL treatments! It is 28 days on and 28 days off! -- I believe I have you ALL up to date and hope to write weekly! <3>

A Much Needed Intestinal Update!

As you all are aware Bennett has been dealing with intestinal/bowel blockages/obstructions for almost a year now! Her GI Doctor has tried all that he can to keep them gone but nothing seems to be working! Since September her medications have increased -- 6 - 17 gram packets of Miralax, 3 tablespoons of Milk Of Magnesia, 4 Benefiber chewables and 3 tablespoons of Fletchers Castoria a day! -- In September we scheduled an AMOT which is a test that checks the pressure in her anus/rectum. She had that procedure done on Monday, November 9, 2010 && the results came back great. She has good pressure in that area and that isn't the cause of the blockages/obstructions. It is great news but at the same time it is bad news. Now, we need to figure out what our next step is! Dr. Focht decreased her medication a wee bit on Tuesday the 10th. She is no longer taking Benefiber and her Fletchers Castoria && Milk Of Magnesia have been decreased to two times a day! -- We spoke also about teaching her to swallow a pill that is large in size. He never told me the name of it, but it works a different part of your GI Tract! As we are in the elevator leaving his office on Tuesday, he calls my cell phone and says he has been reviewing her chart and it amazed at the amount of medications she is currently taking and wants to give her until after our trip to get regulated with the new doses of the medications. If she is not regulated by then, he is going to admit her and insert another NG Tube, to completely clean her intestine, bowel and the rest of the GI Tract out and start her on this new pill and not discharge her until she is having a regular BM pattern. Now this is the hard part! I have been thinking and I mean thinking hard about calling him and just asking him to put her in and clean her out and get her started on this new medication so she isn't suffering any longer! He said that she has enough problems with the other respiratory complications from her Cystic Fibrosis! -- Am I in the wrong for wanting to do it this way instead of causing her more pain and hurt?? <3