To You It Is JUST School Picture Day But To US It is

A HUGE celebration because December 4, 2006 we were told that she MAY not even get to attend her 1st day of Kindergarten. That was one of the worst appointments of my life. I had known she had CF when I was 4 months pregnant but when we went in to get the newborn screening results they told us it was a confirmed positive! The doctor proceeded to tell us that he cannot guarantee that she will make it past 3 years old, once we made it past 3 years old he said our next goal would be Kindegarten, well here we are at Junior Kindegarten. We once again have past another age that they said we may not get to see! So, as I was getting her ready for her big picture day at school, I was very emotional and overwhelmed to know that we were not guaranteed to have this day! Today, September 27, 2011 was her very first school picture day and it by far will NOT be her last! I ordered 30 2'x3.5' square sticker pictures of her to mail out to 30 people who love and have been super supportive of her in this rocky rollercoaster we have been calling life since November 21,2006 to celebrated passing a milestone that we were not guaranteed to have.

I Just Want To Breathe Like YOU!

One day I received a call
It was like no other I've had
Your daughter has CF
But don't be sad
...
... She will not breathe like you
And she will not grow like others
She has to take lots of meds
But she will be the biggest lover

Your doctors and nurses will be like family
There will be many hospital stays
But you will see in due time
Things will be okay

CF is a part of her
This is true
But it does not define her
One day, someday she hopes to breathe like you

CF will take lives much too soon
But if we fight all year round
We can make CF stand for Cure Found!!!

* Again I am not sure who has written this but I posted it because it is very true about our lives as a CF Family *

Cystic Fibrosis Poem

This is my life,
Every morning to every night,
Everyday there is a constant fight.
But not everyone can see,
this fight is between my body and me.
I hurt, I cough, I cry, I breathe,
I just want a break is it hard to see?
They say I'm a hero, they say I'm strong,
but sometimes I think they are all wrong,
I smile, I laugh and pretend I'm okay,
Truthfully, that’s how I make it, day by day.
I constantly hear healthy people complain.
Seriously? How many times have you had a needle shoved in your veins?
I sit, I cough, I gasp for air,
and at the same time, it feels my lungs are starting to tear.
Doctors, treatments, needles and pills,
Just the sound of them, gives people the chills.
Im fighting, I'm breathing,
but at times I'm simply deceiving.
It might seem simple, maybe easily done,
but I've been fighting my whole life.
And this battle I still haven’t won.
You know I'm greatly jealous of you,
because you have lungs that for me, would be considered brand new.
But really what else should I say?
I shouldn’t just sit here and complain.
I have my friends, my family, and I have myself.
That’s really all I need, even if I'm not in great health.
I'm going to fight and im going to win,
I'm going to use all the strength I have within.
I've came this far along,
and I promise you, im going to stay strong.
Thousands of people, fighting to breath every day,
Thousands of people, just waiting to be okay.
This isn’t something you can just simply ignore.
I think it’s time for a cure
Need I say more?

*Not sure who has written this. I am reposting because it touches my heart and tells the story of what Bennett goes thru on a daily basis*

My Dearest Bennett

Dear Bennett,


As your Mommy I just wanted to tell you that I love you with all of my heart. You are my world! Your little sassy smile lights up my day! When Mommy is having a bad day all she needs to do is get a sweet innocent kiss from you and it makes the world disappear. I may make mistakes as your Mommy but I do not mean to. I am trying my hardest to give you the world and more. I wanted to apologize for you having Cystic Fibrosis. Mommy is so deeply sorry for having bad genes that were passed onto you. This journey that we have been on since November 21, 2006 was not at all what I have planned for us. Cystic Fibrosis is NOT and NEVER will limit our hopes, dreams, wants and desires!! It will NEVER hold us back! You are a VERY special little girl who is loved by many, most of which you have not even met before. You have an amazing extended family who love you so very much! Mommy promises that one day, it may not be for another 10 years, but one day there WILL be a cure for this devilish disease that is trying its darndest to ruin your childhood. Mommy & Sean work very hard day in and day out to make sure you have the most normal life as possible. You may think we are mean when you are unable to do something but it is not our intentions to hurt you, we are trying to protect you. Please know that Mommy struggles daily trying to keep our world together because there are times where she just wants to give up and throw in the towel against Cystic Fibrosis. Your strength, courage and will power are what makes Mommy fight the fight even harder. There are times that you see me cying but babygirl it is NOT at all YOUR fault. When I look at how perfect and beautiful you are on the outside, I cannot help but cry because of how sickly on the inside you are. You ARE beautiful. You ARE perfect. You ARE special. You WILL beat Cystic Fibrosis. You WILL graduate highschool. You WILL get married. You WILL go to college like you say each day that you are going to do. You WILL become that Penn State Cheerleader that you dream and long to be. Do you know why these things will happen? Because I am YOUR Mommy and as YOUR Mommy it is my duty to fight and never give up. Yes, there are times to where I struggle because it becomes to hard, but I will NEVER give up. I will NEVER leave your side. I WILL be there until the day I die. I will NOT allow you to die before me. My ultimate goal is to protect you until you have done ALL the things you dream and desire to do and once those things are accomplished, I will STILL protect you! I promise to give you the best life I possibly can! You are the greatest thing that has happened to me. When you are older and are able to read this you will understand just how loved you are! You are and always will be my bestfriend! I love you my beautiful daughter!!


With ALL My Love,
Mommy

September 6 & 7, 2011 Appointments

Bennett had a bunch of appointments on September 6th and 7th.


September 6, 2001 GI Update --


Dr. Mascarehnas made a bunch of changes to her diet.


* Only allowed *


8 ounces of 2% milk a day. It can be split between two 4 ounce cups but it absolutely cannot exceed 8 ounces

4 ounces of APPLE JUICE (only apple juice) a day. It has to be a mix of 2 ounces of apple juice and 2 ounces of BOTTLED WATER (only)

Once she has her 8 ounces of 2% milk and 4 ounces of water, she is only allowed bottled water for the remainder of the day. She however is allowed to have cereal and foods made with 2% milk.

I have to totally cut out ALL red sauces (pizza sauce, spaghetti sauce, etc) out of her diet IMMEDIATELY. As many of you know PIZZA is one of her absolute favorite foods!

Also, I had to stop adding "extras" to her meals such as butter, cheese and anything that will add extra calories. She is no longer on a high calorie diet.


This has been a really rough change to get accustomed too. She is really struggling with it!


She ordered a bunch of tests. She wants to test her stool for fat absorption and things!


September 6, 2011 CF Update --

Dr. Rubenstein was really happy with her PFT's and he is even more excited that she is the youngest patient in our CF Clinic that does PFT's and she does them EXTREMELY well!


Her PFT's were slightly down from 116% to 109% (still an amazing number)

Her chest x-ray was amazing


He ordered bloodwork to check her yearly numbers -- I haven't received the results yet ... calling tomorrow for those

The crackles and wheezing was still in her lungs so I am to continue her nebulizer treatments (Albuterol Only) every 2 hours and her vest 4 times a day instead of the 2 we were doing after her last sick appointment until our next appointment.

She was given her flu shot, which she absolutely HATED! :,0(

Her September 6th culture was NEGATIVE :0):0):0) WOOHOO!!!

I NEED Donald Trumps Checkbook

I decided to show the people that are not fully familiar with how much of a financial burden CF truly is... What I'm listing below is only a FEW of the medications I purchase out of pocket each month! We NEED a cure like YESTERDAY!

This is Bennetts Monthly Expenses

Activities-- (recommended to keep her as healthy and active as possible while she is still able)

YMCA Membership $8.25

Gymnastics $26

Cheerleading $45

Tumbling $80

Medications -- these are the ones I pay out of pocket for, that are not covered by either if her insurances!

Culturelle (probiotic) -- Daily dose is 3 packet. Each box has 30 packets. One box is a 10 day supply $34.00 per box. 3 boxes purchased per month totaling $105

Milk Of Magnesia -- One tablespoon twice daily. One bottle lasts approximately 6 days. $10 per bottle. Five bottles purchased per month totaling $60.

Vitamin C 500mg -- One tablet twice a day. $10 per bottle. One bottle purchased a month totaling $10.

Multi-Vitamin - One tablet twice daily. $10 per bottle. One bottle purchased a month totaling $10.

Allegra -- Two 30mg tablets a day. $11 per box. 12tablets in a box. 6 day supply. 5 boxes purchased monthly totaling $55

Fletchers Castoria -- Two tablespoons daily. $6 per bottle. One bottle lasts approximately 3 days. 10 bottles purchased monthly totaling $60.

Benefiber -- 3 packets a day. $10 per box. 18 packets in a box. 6 day supply. 5 boxes purchased a month totaling $60.

Pediasure -- 3 bottles a day. $11 for a 6 pack which is a 2 day supply. 15 six packs purchased a month totaling $165.

I didn't list her Zrytec, Claritin, Two nasal sprays, two eye drops and Miralax.

Just for the ones I listed for an example to give more if an insight on how much of s financial burden CF is the total is $525 not including the $159 for her activities to try to keep her as healthy and active as possible and the meds I didn't list. The total for all that I did list is $684

I want to give a HUGE Thank You from the bottom of my heart and wallet to the people who have been sending coupons each month! With the money I save in coupons I'm able to buy an extra box of each medication! We truly appreciate it!

Oh BOY!

Or girl?

For a VERY long time Bennett has been asking well begging for 6 sisters and 1 brother. She even asked Santa Claus and The Easter Bunny last year. After much thought and discussion. Sean and I have decided to give her a sibling! We want to fulfill all of her wishes!

What Are YOU Afraid Of?

"What are you afraid of?" were the first words out of Dr. Rubensteins mouth when he walked into the exam room during Bennetts clinic appointment on June 14, 2011. I just stared at him with a blank look on my face because that question totally caught me off guard. He then said "Seriously, put it all out there What are you afraid of Emily?" Instantly I began to cry (I am a VERY soft person now that I am a parent of a child with special needs, I am not longer that tough girl that I once was in high school and up until the birth of Bennett, My fellow high school classmates can verify that statement) & I start to name the things that I am afraid of:

* I am afraid that I will NEVER get too see my daughter graduate highschool

* I am afraid that I will NEVER get too see my daughter go on her first date ( at age 40 ;0)

* I am afraid that I will NEVER get to see my daughter go off to college

* I am afraid that I will NEVER get too see my daughter graduate college

* I am afraid that I will NEVER get too see her walk down the aisle on her wedding day

* I am afraid that I will NEVER become a grandmother

* I am afraid of so many more things

Dr. Rubenstein interrupted me and said "Cystic Fibrosis will be the cause of your daughter's death. I cannot tell you when she will die, but I can tell you that it isn't any time soon. I am a scientist that researches 4 days a week and sees patients 1 day a week. I know you lost trust in all medical staff because of Bennetts last clinic. I am not asking you to trust me. I will earn your trust in the months to come, but I am asking you to allow me to take care of your daughter to the best of my ability. The things that you said you are afraid of may come true. Cystic Fibrosis has a mind of its own." It is a brutal disease that is causing your daughter to suffer and eventually die.


Then he proceeds to tell me that he is worried about Me, yes ME. He isn't not worried about Bennett, it is ME that he is worried about. I asked him why with yet another blank, puzzled look. He told me that my anxiety level over worrying about Bennett dying is the highest he has ever seen in any of his patients parents. He said that I am ONE of the only parents that is on top of her health, medications, therapies and appointments, that goes above and beyond to make sure she is healthy as she can be. He told me that I am dedicated to taking care of her medical needs. He said that it is outstanding how much time I dedicate DAILY to taking care of her and he wishes more of his parents would do it. At this point, I am sobbing because this talk is causing the reality of Cystic Fibrosis become more apparent. I never really talked about my fears before until today. It made things more surreal. I am still in denial a little bit but not as much as before. It breaks my heart everyday that she suffers because there isn't anything that I can do besides give her the best life I possibly can. I am trying to do the best I can. It is hard. It is very hard. I would never wish this disease on my own worse enemy. My babygirl does not deserve this disease. What did she do to deserve it? She is just an innocent 4 year old little girl thriving to be a normal child!



Yes, I am proud of how much time I spend daily focusing on her needs! I truly do not mind sitting on the sofa with her 3 times a day for 30 minutes at a time while she does her vest, standing in the kitchen 15 minutes 3 times a day while she takes her meds/sprays, spending 1 hour 2 times a day doing physical therapy with her such as relay races, doing exercises on the yoga ball strengthening her tummy muscles, etc. Our entire day isn't consumed with CF related things eventhough 75% of our day is. We go to the park, swimming, playdates with friends, the library and movies.


What Mommy wouldn't have anxiety over their child passing away? I watch her struggle on a daily basis to do the simple things that alot of us take for granted such as smokers. I cannot tolerate smokers anymore because they are taking their perfectly healthy lungs and turning them into junk when they could be used for a CF patient that cannot control their lungs being a piece of shit! The next time you light cigarette think of a 4 year old little girl who would give the world just to be able to breathe like we can. IS that cigarette as refreshing now?

Oh how about you drug addicted screwballs that enjoy being on your suboxen that the GOVERNMENT PAYS 100% for while a 4 year old little girl gets denied by her insurance on a daily basis for medications that she NEEDS to live, she didn't chose to have Cystic Fibrosis like you CHOSE TO STICK A NEEDLE IN YOUR ARM for what? An hour of drooling on yourself, doozing off and not remembering a damn thing while you were higher than a kite on an illegal drug? How does it feel knowing that one of the medications she takes on a daily basis to help her breathe better is given to you worthless fucks when you overdose to bring you back to life? Think about that the next time you want to stick the syringe in your arm!

Again you drug addicted scums get to enjoy your FREE money from the social security administration. It must be nice to be handed a check every month for being a waste of air! I had to fight for 3 1/2 years for my chronically ill daughter to receive what she deserves. While you spend your $700 a month on drugs, think of this same 4 year old little girl who has a lung disease because she only receives $44 a month and that is the costs of ONE dose of ONE of TWENTY TWO medications she is on!

No I am currently NOT working, I WAS working! I worked for 2 1/2 years of Bennetts life until she became too ill and I had NO OTHER choice but to walk away from a job that I loved doing. While I was at work it was the only time I did not have to think of CF, She was in good hands with my Mother. NO I do NOT receive ANY help from ANYONE. I am doing this on my own. And it is NOT easy at all but we manage. I have very few good friends and MANY MANY MANY friends that I have never met that are here for me more than the friends I have here at home!

I must stop this rant NOT because all it is doing is upsetting me even more! I will write the rest tomorrow!!

May 24, 2011 -- GI Appointment

This is the appointment that I figured would go well but unfortunately I was wrong. We met with her new GI Doctor, Dr. Masacarehnas. She is very thorough but was full of heartbreaking news! She told us that Bennetts old GI Doctor possibly misread her Pancreatic Stimulation Test. July 2010 Bennett had a Pancreatic Stimulation Test done too see if she was Sufficient or Insufficient. She was taking Creon 12000 since birth and when her CF doctor referred us to her old GI doctor he was astounded by the amount of Creon she was taking for being only 4 years old so he suggested we do this test. Well the results he told us were that she was Pancreatic SUFFICIENT and no longer needed to take the enzymes to stop them immediately. He followed her care for almost a year. From April 2010 to April 2011 she needed to have FOUR NG Tube Cleanouts for bowel/intestinal blockages. Her new doctor Dr. M diagnosed her with DIOS (distal intestinal obstruction syndrome). Yes, we have yet another "disease" under out belts. Lovely huh? Dr. M is having me do a daily diet log & wants a stool sample to run tests on her. Once these stool test results are back we will move onto the next phase of testing. Dr. M believes that Bennett infact isn't Pancreatic Sufficient. She told us by reading her old records from Geisinger that she is Pancreatic Insufficient and perhaps needs to be put back on the enzymes. At this point in the appointment I am in tears because my babygirl has yet another new diagnosis. It is killing me inside. My baby does NOT deserve this.

Unfortunately, I have NOT been able to do the daily diet log because Bennetts appetite has diminished. She hasn't been eating enough to keep a bird alive and her belly is very swollen and hard. Which indicates she is obstructed again. Her last good bowel movement was now 5 days ago. She has taken TWO Miralax cleanouts of 255 grams of Miralax mixed in 64 ounces of juice and has one passed liquid. The liquid is stretching out around the hard blockage. It has been 6 weeks to the day since our last NG admission. This is truly unfair. She takes Miralax 6 times a day, Benefiber 3.5 grams 3 times a day, 2 tablespoons of Milk Of Magnesia, and 2 tablespoons of Fletchers Castoria a day and still has problems. We have tried to change her diet, given stool softeners and everything but with her having DIOS, there isn't much we can do besides surgery and NG cleanouts every 6 weeks for the rest of her life!


Below is a link that has a better explanation of what DIOS (Distal Intestinal Obstruction Syndrome) is:

Distal intestinal obstruction syndrome (DIOS) involves blockage of the intestines by thickened stool and occurs in individuals with cystic fibrosis. DIOS was previously known as meconium ileus equivalent, a name which highlights its similarity to the intestinal obstruction seen in newborn infants with cystic fibrosis. DIOS tends to occur in older individuals with pancreatic insufficiency. Individuals with DIOS may be predisposed to constipation.

Symptoms of DIOS include crampy abdominal pain, vomiting, and a palpable mass in the abdomen. X-rays of the abdomen may reveal stool in the colon and air-fluid levels in the small bowel. Surgery is often required to relieve the obstruction. However, if there is no sign of bowel rupture, a more conservative approach may be attempted. Restricting oral intake, placement of a nasogastric tube for decompression of the stomach and proximal intestines, and administration of laxatives and enemas may resolve the obstruction without the need for surgery. Individuals prone to DIOS tend to be at risk for repeated episodes and often require maintenance therapy with pancreatic enzyme replacement and stool softeners.

http://www.cfeducation.ca/pdf/DIOS_Children.pdf

May 24, 2011 -- Allergy Appointment

Bennett was still suffering from her severe allergies despite being on Singulair, Claritin, Flonase & Zyrtec. She was put on those excluding the Singulair April 5th. She was/is still experiencing really bad congestion in her sinuses and chest, her ears, nose and throat are really inflammed and her eyes are puffy & red. I made an appointment for her on May 24, 2011 & we discussed what our next step would be. Dr. Rosemary added Allegra and two eyedrops to her Allergy Med list too see if she could get at least some sort of relief. And the next step is injections. They would like to be able to do skin testing on her because it is more accurate than the blood tests that she has had. But, they cannot do the skin testing because she cannot be off of her Allergy medications the required 5 days in order to get a good reading. :0( We are hoping that we can get them under control and she is able to have the testing done in August. The problem with the injections is that they do not do them on patients under 5 years of age. We agreed to start her on them in September 2011. She will receive injections, one per hours from Noon-5pm, 5 days a week for 6 months! She is only allowed outdoors for a maximum of ONE hour per day unless she is having a "good" day! I have been having my hands full trying to keep her occupied and not asking to go outdoors to play and swim with her friends! I am starting to run out of ideas! If anyone has an cool craft ideas please forward them onto to me!

For the past two days she has had a slight fever, runny nose, and her eyes are starting to get dark circles around them. Major indications that she is becoming sick. Her allergies play a huge role in her CF flaring up, the sinus drainage is draining into her lungs and causing it to be harder to breathe for her. She just had a tune-up from February 21, 2011 to March 7, 2011 & her CF Doctor & I have been emailing back & forth about admitting her on June 14th straight from her clinic appointment for a 21 day stay! :0(

Split Second Timing

Bennett produced a really nasty junky, wet, barky cough lastnight while in the hospital. She goes into really scary coughing fits and has trouble clearing her throat. We were discharged from the hospital today despite her catching something while being admitted for an NG cleanout of Golytely.


She was really sleepy and I know she hasn't slept very well in the past 4 nights, so I started her nebs and vest a little early so she can get settled into bed.


At 7pm I hooked up for vest and neb of albuterol/pulmicort. The shaking of the vest began. She fell asleep 8 minutes into her vest. Since she had fallen asleep I decided to clean out my purse and write her new appointments/med changes into my calendar. I often glance over at her while she is doing her treatments too see if she is sitting up properly when she falls asleep.

During the first few minutes in she had a tiny coughing spell and that was it. She uses a Pari LC neb mask and for those of you who do not know what it looks like, here is an example:



I for an unknown reason glanced over at her and I dearly thank god that I did. I saw her mask filling up with mucusy vomit. I jumped up and ripped her mask off and leaned her over and just left it go onto the floor. If I was a second late glancing over at her, she would've ended up choking and/or aspirating because her mask was filled up and the only place for it to go would be back down her throat. It was like cleaning up egg whites (also for people who aren't familiar with what CF patients bring up). She didn't gag, cough or give any other sign she was going to throw up. I WAS going to do the dinner dishes while she did her treatments but thankfully I was feeling lazy and was going to do them after she was asleep!


I thank you dearly god for having me glance over at her at the second you did! If not, who knows what condition my baby would be in right now!


This is another example of how unpredictable Cystic Fibrosis truly is!


She is now awake and lying in bed. She still sounds very congested and junky eventhough she just emptied a good amount out!

We Need A Plumber!

As many of you already know Bennett was admitted into the hospital yesterday. We are in transition of moving ALL of her doctors over to CHOP (Children's Hospital Of Phildadelphia). The last one to be transitioned is GI. We saw her Geisinger GI March 29th & he said that he would feel more comfortable with her care being transitioned to them since her other doctors are now there, and I agreed eventhough I REALLY liked Dr. Focht. So, when we got home that afternoon, I had called CHOPs GI department and their first opening is May 24th. Far away!



Bennett has been having ALOT of lower back, right side near her ribs/kidney and in her legs on and off for two weeks. When she started to complain I gave her 255 grams of Miralax with 64 ounces of juice too see if it was the start of another blockage, but she went potty, fine. I figured she was still okay since we had just gone to the doctor and she was clear and was going fine. The pain became more intense and her belly started to swell. I took her to the Emergency Room on April 22nd. The ER doctor told me that her kidney function was low and she has several blockages and to call her GI doctor. I explained to him that we were in transition and he said to call her old GI, so I did on Monday morning. He finally called me back on Tuesday morning and he put orders in for a urinalysis, bloodwork and belly films. I took her over to her Pediatricians office when she woke to have them done. Then the waiting game began! He called me Wednesday morning with the results and he said this was the worse she has ever been. The entire lower portion of her large intestine was completely blocked (about 8 inches in length), her small intestine and the rest of her large intestine wasn't completely blocked but it was full of obstructions, her transverse worse as well, her colon was full. He said he wanted too see her in his office at 10:30 Thursday morning for a direct admit.


Day 1 Thursday Evening -- They started the golytley at 5:30pm, gave her 300ml of mucomyst rectally. She is getting the golytely at a really high rate of 100ML an hour. Within an hour of receiving the mucomyst rectally, the obstructions in her rectum/colon came out. She was screaming in pain because it wasn't broken up. She held onto my hands and cried her little heart out yelling "Ow Ow Ow Mommy Make It Stop Hurting!" -- It took me all I could do not to beak down in front of her. She went potty once and a fair amount of what looked like muddy water came out around 11pm. Then she didn't go to the potty again. She fell asleep about midnight and slept until 6am.


Day 2 Friday -- The lab came in and checked her BPM which was in a good range, Radiology came in early and took another belly film which showed that only the obstructions in her colon/rectum came out and there wasn't must change in the rest. At about 8am she went potty and it was a great amount, she was on the potty for about 45 minutes! I sat in there and played a game with her to keep her occupied. That was the first and last time she had gone all morning/afternoon & early evening. Which isn't good! She is refusing her trays of broth, apple juice and ginger ale. I went down to the cafeteria, went to the soup counter and grabbed a bowl of the good broth from the chicken noodle soup around 7pm and fed it to her. She ate almost the entire bowl of broth for me and drank a ginger ale. Phew! I will go down each time she says she is hungry. The doctor isn't liking that she only went potty twice today. The second time she went was about 7:45pm. He said with the rate she is receiving the golytely, she should be glued to the potty. :0( I am going to ask him tomorrow when he comes in if he can give her another dose of Mucomyst rectally because that seemed to have worked really well. It broke up the mucus and everything came out easily, yes it was painful for her but it came out. It is 11:50pm and she has been sleeping since around 9pm.


I am going to get off of here and TRY to get some rest. She wants me to sleep next to her bed so I am! This chair isn't very comfortable, but anything for my babygirl! Please pray for progress! We truly appreciate all the love and support! Keep it coming! <3 Hugs & Love! <3 Goodnight!

The Chosen Mothers

The Chosen Mothers by Erma Bombeck (with a bit of an edit)

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

Finally, He passes a name to an angel and says, “Give her a child with Cystic Fibrosis.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with Cystic Fibrosis a mother who does not know laughter...? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.”

"No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -”Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

May 4, 2007

I’m angry because you pursued me relentlessly and told me you wanted me
to be your girlfriend.

I’m angry because I learned you did that with others while we were still
together.

I’m angry because you lied when you told me you weren’t attracted to other girls. I
later learned you lied.

I’m angry because I can’t tell you how angry I am.

I’m angry that it makes me hurt when I see, hear or write your name – even
when it isn’t you who’s being referred to.

I’m angry that you led me to believe you wanted a life with me and Bennett.

I’m angry that I can’t just come over your place when I feel like it.

I’m angry that you would probably let me if I wanted and that I have to resist.
I’m angry because I can’t talk to you.

I’m angry because I’m lonely and you have several lovers vying for your
attention.

I’m angry that I don’t know exactly when you began disregarding my feelings.

I’m angry that I don’t know what things you said were true and which were
not.

I’m angry you never tried.

I’m angry I loved you so much in the beginning – or was so excited that
someone attractive and interesting wanted to spend time with me that I
ignored warning signs.

I’m angry I fell in love with you.

I’m angry because I haven’t been happy for months.

I’m angry I can’t just make things right.

I’m angry when strangers in stores or on the street tell me to “smile.”

I’m angry that you are having fun and not suffering like I am.

I’m angry that I’m jealous of whoevers in your life now.

I’m angry that when I suggested that you take some time to be single, you
emphatically said you didn’t want that and were happy with our relationship.

I’m angry that I believed for so long that you loved me.

I’m angry I haven’t moved on.

I’m angry that I feel like crying right now.


I’m angry because I can never have a truly honest conversation with you.

I’m angry because I have to avoid you.

I’m angry that it hurts when I see things you would like or be interested in –
or when I hear someone else talk about them.

I’m angry there are so many of those things.

I’m angry because Bennett misses you dearly.

I’m angry I shared so many personal secrets and fears with you.

I’m angry that I don’t really know you at all.

I’m angry I will never know how much meaning our relationship had for you.

I’m angry because I will never know how you really felt about me.

I’m angry because I still think of you.


I AM ANGRY BECAUSE I STILL LOVE YOU!

Daily Nebulizer Care

These are the 5 steps that it takes to clean & sterilize her nebulizers daily. She has only cultured pseudamonas ONCE in the 4 1/2 years that she has been on this earth. She cultured them October 28, 2010 & they were finally cleared up January 11, 2011. It took nearly three months of inhaled and oral antibiotics to clear up the nasty pseudamonas in her precious little lungs



She takes her nebulizers as follows:



8am - Pulmicort & Albuterol -- 17 minutes (roughly)
8:20am -- Pulmozyme -- takes 10 minutes (roughly)



I begin sterilizing them at 9am and they finish close to 10:45am



12pm -- Albuterol & Mucomyst


The sterilization begins at 12:30 & it finishes close to 2pm



4pm -- Albuterol & Mucomyst -- takes 17 minutes (roughly)



Third sterilization session begins around 4:30pm and it finishes roughly 6:15pm




8pm -- Albuterol & Pulmicort -- takes 17 minutes (roughly)
8:20pm -- Pulmozyme -- takes 10 minutes (roughly)



Final sterilization begins at 9pm and ends at roughly 10:45



She has separate neb cups for each medication. So she has 5 -- The fifth one is for her TOBI if/when she will be on it again!



Also, while she is doing these inhaled medications through her nebulizer she is doing her SmartVest (www.smartvest.com) for 30 minutes which equals two hours of her day.



Physical therapy for 30 minutes twice a day.



Electro Flo 5000 which is a hand-held percusser, which I do two times a day for 15 minutes at a time focusing on certain parts of her lungs.



Step 1 -
Soak and scrub in Dawn dish detergent with hot water to clean off any residue. I scrub them for 10-15 minutes in extremely hot water (120 degrees).








Step 2-
Hospital grade disinfectant/germicide to kill any pseudamonas or staph. his is what they use to sterilize Operating Rooms & Intensive Care Units. Soak for a minimum of 10 minutes.










(Close up up the disinfectant- what you see in these pictures is only HALF of her daily nebulizer cups)











Step 3 -
Neb soup! Boil all parts for 10 minutes to kill anything else (Yes Step 2 and 3 are similar, but I want to be SURE I am doing everything in my power to keep those bugs out of her lungs!)








Step 4-
Dry Heat. This dries the neb parts for me and then I run a second cycle to be sure nothing is still damp so pseudamonas does not have a chance to grow...(you would be shocked if you knew where PA is growing in your own house)....30 min per cycle



This isn't the one that I use. I use a different sterilizer. It is a germ guardian that I put in the microwave with water and it steam dries them. Two cycles of 15 minutes....













I would like to Thank Catherine Elizabeth Hopkins for allowing me to use her photos! These are her photos but she had given me permission to use them since her & I use the same method of sterilizing our babies nebulizers and fighting hard to keep our warriors healthy!




The reason behind this blog is to show everyone just a glimpse of what a day in the life of a Cystic Fibrosis patient is. This is just a small part of our daily lives. This right here is 8 or more hours of my day! And I wouldn't change it for the world.




She does her neds at 8am, 12pm, 4pm and 8pm and I sterilize them from 9am to 10:45am, then 12:30pm to almost 2pm, 4:30 to 6pm & then finally 9pm to 10:45pm. And I still manage to give her a normal as possible life. She gets 18 different medications a day.





Mommy Loves You Babygirl! I Will Fight Til' My Last Breathe For You! There isn't anything I would NOT do for you!

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!!

Out Of Pocket Medications

My dear friend Tara had asked me to post a blog with the medications that I pay out of pocket for so she and if others are into coupon clipping can keep an eye out for the things that I buy and could use the coupons on! Thanks so much Tara!

It necessarily does NOT have to be the brands that I post, these are the ones that I have been buying for almost 4 years now!

Every little bit helps! :)

Benefiber Assorted Fruit Chewables
Culturelle Probiotics For KIDS also known as lactobacillus - 30 packets lasts 10 days
Milk Of Magnesia -- One large bottle lasts 1 week
Fletchers Castoria -- One Bottle Every 3 days
Pediasure -- Vanilla or Strawberry -- One 6 pack every 2 days
Little Critters Immune C
MultiVitamin Gummie
Arys Nasal Gel
Mirralax -- I buy 1/2 of a month and insurance pays for 1/2 a month CRAZY!

That is the list of over the counter items I purchase! -- It is subject to change at any moment!